Tried excedrin, ice packs, putting feet in hot water, peppermint on temples, etc.
Prayers to know what causes this and that it will go away.
Thanks
Hate this
Posted by Jane2904 (Member # 15917) on :
Sorry Kam that you are feeling so badly.
Do you think it could be the full moon this time?
Hope it goes away quickly.
Posted by GretaM (Member # 40917) on :
Praying for some relief for you Kam.
The brain pain and inflame is super tough on one's will. I am praying it gets better soon!
Posted by susank (Member # 22150) on :
My head hurts.
Researching - my head mess could be from Doxycycline.
Are you taking Doxy? Ever taken Doxy?
It's not as "innocent" as I had thought.
Headaches - mental stuff etc.
Reading patients reports.
Posted by kam (Member # 3410) on :
Just took 2 more excedrin.
5:15 here..3 more hours and then I can take the stuff to help me sleep.
praying I sleep and wake up without it in the am
Gut is blaoting too...can't recall but seems gut and brain inflaamtion usually happen at same time.
Vision is off so typing thsi with eyes closed.
Thanks for ht prayers...thought it was going away but flared back up
Posted by momindeep (Member # 7618) on :
Prayers for you Kam.
Posted by kam (Member # 3410) on :
one more hour I think. Breath in. Breath out.
Posted by Dekrator48 (Member # 18239) on :
Praying for you, kam.
Hope you are feeling better this morning.
Posted by kam (Member # 3410) on :
I think it has broke. Wishing and hoping and praying. Posted by Lymetoo (Member # 743) on :
Hoping so!! We'll keep the prayers going!
Posted by kam (Member # 3410) on :
4:45 am Woke with the head suttf. Just took 2 excedrin. Prayers it goes away.
Ove rheated too but too out of it righ tnow to do anything about it. Bouncing off of walls.
When able, need to get up and close windows and turn on air contiditiong.
Hate this.
Posted by LisaK (Member # 41384) on :
praying!
Posted by kam (Member # 3410) on :
I think I am OK. Laying low...need to get back up and put my ice on the brain and the spray and the ppermint when I think I can move without making things worse.
Posted by kam (Member # 3410) on :
it hasn't broke yet. Might take a couple more excedrin.
One of those days when a peaceful death sounds more do able than fighting this.
But, I knwo from past experience that once this lifts I will get the fight back
Thankfu for Rosie.
Looking forward to when I see the LLMD and can ask him or her about this.
Posted by momindeep (Member # 7618) on :
Thinking about you and asking the Lord to help you.
Posted by kam (Member # 3410) on :
Doing better. Got out of the house in the car.....storm clouds came in and cooled thing sdown...
a few rain drops..
but brain inflamation went down...nice...hope it is ok the rest of the night now that I am back in the house..
Posted by kam (Member # 3410) on :
need prayers again. Wondering if supplements can trigger this??
Posted by kam (Member # 3410) on :
doing b etter. i think it has lifted.
Posted by kam (Member # 3410) on :
Woke at 3 am with the head stuff although it was rough day the day before but not as bad as 3 am
Still struggling...wearing the depends but so far able to make it to the bathroom thankfully
but hard on the system..not tossing my cooies yet but close
Need prayers again...thanks
Using ice packs
excedrin
intense muscle spray
dark room..trying to watch a movie but that isn't working too well..making brain hurt more
typing with eyse closed
medical examer is coming at 1 ish today for the eval to get long term care aproved
i have been thru this beofre and have been denyed several times
superviors of caregivers keeps putting me in to be evaluated
it would be a good thing to get aprpvoed but the process makes my health wworse.
told person i can' do a verbl interview...she said that is the way it has to be
i will protect my health and put my earp protection muffs on when she si here
gong to see if maybe it can be rscheudeld as i am just too sick and don't want to get to the point where i think being dead is a good idea
the intervie will make me worse.
Posted by GretaM (Member # 40917) on :
Prayinf for you Kam.
Hope interview goes good- maybe them seeing you vomiting will help convince them.
Praying for good interview also.
XOXO
Posted by kam (Member # 3410) on :
almost 11 am. just checking in. i thought i was doing better.
i thought i might be able to do something in the kitchen
but first had to go to the bathroom.
that did me in..brain flare dup again and i am back own...need to get back up and get ice for the brain in a bit.
the past two days i am reminded that if i were a dog they woudl have put me ut of my sufereing by now
i know that i will have the will to fight the good fight once this breaks
i just need to wait this out
Posted by kam (Member # 3410) on :
Got an email from the supervisors of the caregiver organization. She said she spoke to the person with long term care and I scored a 20 last time.
I need a 60 to get in the system so they will not be coming out today. Finally some answers.
I do think I need the lyme doc to help me get that medical need up.
Posted by kam (Member # 3410) on :
It is a relief to know I don't ahve to deal with them today.
But, brain inflamation still needs to come down.
Getting up to get some more ice now
Posted by randibear (Member # 11290) on :
there is a product called migrainerelief. I may have misspelled it but it worked wonders for me.
jus checked. its called migrelief. I believe it's on Amazon
Posted by kam (Member # 3410) on :
thx i'll give it a try
i jus ttoook a couple more excedrin and sprayied my head with atht intense muscle spray. Need to get up and see about more ice .
2:20 pm. 6 mor ehours until I take the sleepin gmed combo and hopefully get some relief and wake up with out this pressure stuff.
Posted by kam (Member # 3410) on :
For some reason I thought I had put the this stuff behind me.
Posted by kam (Member # 3410) on :
3:20 pm. Difficult to know if the excedrin helpe dor not. I am not getting any relief but at laeast it is not getting worse I hope.
Posted by Jane2904 (Member # 15917) on :
Hope this passes soon for you Kam. So sorry you are in pain.
Posted by kam (Member # 3410) on :
Thx Jane
one more hour to go
Posted by kam (Member # 3410) on :
Woke in th emiddle of the night without the inflamation in my brain.
But, it started to increase
Not as bad as yesterday
Just took 2 excedrin and hoping it will go away.
Posted by GretaM (Member # 40917) on :
Kam-is it very hot where you are?
Does cold towels on your neck help?
Posted by kam (Member # 3410) on :
Yes that helps.
One more hour to go then I will take the sleeping pill and gabapetin.
Hoping they help me fall asleep and I wake up without this.
Took 2 more excedrin at 5:30 pm but I don't think it helped much.
Posted by kam (Member # 3410) on :
thanks fro the preayers. it lifted last around 8 pm after i had taken the sleeping med and gabapetin
i considered getting up to see if i might be able to take a shower or do some dishes but decided not to rock the ooat.
i am doing ok this am
hoping it doesn't start back up again
again, considering taking a shower and or doing a few dishes
Posted by kam (Member # 3410) on :
Need prayers again. The brain inflamation has yet to let up this am.
Thx 11:30 am now.
Laing on ice pack
When able, I will get up and use the intense muscle spray..the spray part of it broke so need to come up with plan b for getting it on the brain or skull
MIght need to takae a couple more excedrin too..but hope not.
Posted by LisaK (Member # 41384) on :
prayers for you!
I hate head stuff!!!!!
can you take some red wine?
Posted by kam (Member # 3410) on :
thx lisa. i have the gut thing too..next time i see a yme sepcailist i am going to ask them for suggestions on the bloated gut as if i were pregannat and the inflamed brain combo...
it seems to go hand and hand although i get the bloated gut thing by itself too
Posted by kam (Member # 3410) on :
i think the sugar in the wine would make things worse for me...i haven't had any wine, alchol in years and years
Posted by momindeep (Member # 7618) on :
Hope you are feeling better.
Posted by kam (Member # 3410) on :
thx momindeep...doing better. i was in and out of sleep for ? hours.
I think if I just continue to lay low I should be fine now until bedtime.
Tomorrow is new day
Posted by Lymetoo (Member # 743) on :
The bloating is usually candida/yeast, kam. And it does indeed affect the brain.
Hope it lets up very soon.
Posted by kam (Member # 3410) on :
NO blaotin gthis am but I do have the inflamed brain thing. Laying on ice now.
Took 2 excedrin at 5 am.
8 am now.
Praying ti lets up soon.
Posted by kam (Member # 3410) on :
10:45 am. I hve been in and out of conscouness.
Several trips to the komad...lot of BMs'
not sure why but it seems to go with the head stuff.
Typing with eyes closed.
Just put some intense muscle spray on.
Still using ice pack
Nt sure what to do next to help...mabye the feet in the hot water thing next but any movement at this point makes me feel worse. And I reallly am ot stron geough righ tnow to try and sit on the handicap bench in the shower to pput my feet in a plastic tub
I will lay here a bit and then maybe try..bowels are stil acting up..I still have dpeends on but so far have't had to use them thankfully.
Posted by kam (Member # 3410) on :
Took a couple of exceedrin.
I think soakeed feet for 10 min...nt sure but couldn't sit upright for any longer
Forgot to put ic e pack on hed while soaking feet in hot water
At first water was too hot...then put feet in again and couldn't feel anything..excedrin must have kicked in??
Back down now...going to see if I can handle watching a slow moving mvoe.
11:33 am. Need to get up and get another ice pack but fo rnow..moving is not a good idea
Posted by kam (Member # 3410) on :
had another BM...i hve lost count on how many I have had this am..it always amazes me how full of it I am. Posted by kam (Member # 3410) on :
I think it is pain that cuases me to keep havin gto go to the bathroom. I
Posted by Lymetoo (Member # 743) on :
Kam .. any chance you can keep a food diary?
Posted by momindeep (Member # 7618) on :
Asking the Lord to help you.
Posted by kam (Member # 3410) on :
I was trying to figure out how to do that as I usually can't go bck and red what i wrote.
Maybe on here and others might be able to see a pattern.
I just had half of a almond butter and strawberry (fruit only) gf sandwhich...still trying to take a few more bites.
So weak
And took the tramadol and gabapetin
A couple of things I wonder are about the gf pancakes with pure maple syrup
and the gf chicken tenders
I'll start a food diary soon on here
Posted by kam (Member # 3410) on :
Food is tricky as I can eat some tings and be fine and maybe have a reaction aontoher time.
I also know that not getting food in me can cause problems too with brain pain
So, it will help just ot keep the food diary to make sure I am eating. I know I odn't eat enough each day but do the best I can
Posted by Lymetoo (Member # 743) on :
Do you remember what you ate yesterday?
Posted by kam (Member # 3410) on :
Able to take Rosie out to toilet...thankfully it was a very short outing...
put antoher ice pack on brain
had the dry cough and felt like tossing my cooies whiel out and brain presure got worse
put on peltor ear muffs to keep noise level down but was still effected by cars and air conditong unt
smell of neighbors cigarett smoke was worse too
Posted by kam (Member # 3410) on :
can't think righ tnow what i ate...
i am wonderin ghow much i drank yesterday
i think hydration is alo aprt of this
since i have started the lemon cuke drink the pain brain is not as bad as it could get
tried drinking one of the pitchers this am and not sure if there is lemon or not in the drink..tastes more like just cucmber adrink...but i ll try again alter
nto sure what i ate yesterday...brain cant handle tha tprocess right now
Posted by kam (Member # 3410) on :
got rosie feed for this afternooon
Posted by kam (Member # 3410) on :
sent email to local acupuncturist but told her i needed to write a check and hav eher not cash it until next month.
i haven't heard back but i knwo she doesn't read her emails very frequently..she is one that needs to be contacted via the phone
Posted by kam (Member # 3410) on :
got up to put some more intense muscle spray on the temples, brain etc but forgot
dished up some applesauce but forgot it n the kitcnen
put some gr giant mixed veggies in microwave
need to just lay still for awhile and then i'l get up and go to kitchen
3:45 pm
4 more hours before I can take sleeping meds and hopefully get some relief form this
Posted by kam (Member # 3410) on :
i know i didn't do a good jovb of eating yesterday or drinking due to health
i recall having some gr giant creamed spinach for dinner
Posted by kam (Member # 3410) on :
ok took a tramadol and gaba
had a few bites of the gr giant mixed veggies
trying to decide whether ot not to take a couple more excedrin or not
pressure is bldg again
laing on ice pack but not sure if it is helping or making thins worse
put the infalmed ..no intense muscle spray stuff on
maybe I wil try the hot water in the plastic bin and soakign my feet in there next...need to lay still first
lord, lease take this away from me amen
Posted by steve1906 (Member # 16206) on :
The only things that ever help me is---(very dark room)---(lots of ice)---and---(Any drinks with lots of ice.
Feel better Kam!
Steve
Posted by GretaM (Member # 40917) on :
Kam-the brain pain makes me have to go to the bathroom more also.
It is like my body is trying to empty itself when I get the bad brain pain.
Vomiting, frequent BMs, no appetite.
I'm sorry you're going through this.
Steve is right, icy water helps me also. So do the gel packs tied to my head.
I take lots of meds to survive it but can't each much food either with brain pain.
Cigareete smoke, even others burps, I can smell . Also hair smell and even leather smell makes me gag.
Praying for you Kam.
Posted by kam (Member # 3410) on :
thanks greta
Took 2 more excedrin at 5:30 pm. Drove Rosie a shosrt distance up a hill to let her do her business
it was nice there...cool breeze...i didn't realize how hot and stuffy the house was.
opened windows
need to put ice pack back in freezer and need to put ice in other pack when able
hoping to put ice on head and feet in hot water..not sure if it helps or not but worth a try
just logging in to try and remain sane.
i'll have to read steve's post in a bit
2 more hours than I can take the sleeping pill and gaba and hopefully sleep and get some relief from all of this.
for now..not movingI did drink a littel bit more of th elemon cuke drin..pitcher is just about empty
Posted by kam (Member # 3410) on :
Got a break during the night. The sleeping pill and gaba helped me to sleep.
Typing with eyes closed.
Took 2 excedrin this am. 5:45 am
Took Rosie out to toilet via power chair...not doing well and Rosie kept wanting to stop and eat the bgrss.
NOt even sure if she went peee. I know she went poop. Need to go back and pick it up when able.
Tried to talk to a neighbor who was also out toileting her dog in a power chair...but it was too much.
Looked up how to kill yourself with sleeping pills yestrday but couldn't read what it said.
I wouldn't do it with Rosie in the house. NOt sure I have what it takes to do it anyway.
I have always told myself to wait unti this pain breaks and then see about it.
But,after it breaks I have the fight the good fight back.
Still not at thta tpoint yet today.
Trying to get some Kind GF cereal down me this am. Had one spoon full so far.
Posted by kam (Member # 3410) on :
Learned the maratron (SP) almond butter I ate yesterday is one on the recall list.
I have been eating it all month adn the month before that. Ugh.
Posted by kam (Member # 3410) on :
Needd to put more ice in ice packs..but not doing well enough righ tnow to do it. Drove Rosie out to do her busienss but not doing well enough to had her get right back in the car before she could do her business.
She should be OK...
She hasn't even ate her morning breakfast yet.
Need to maek the pitcher of the lmeon cuke drink but not doing well enough to do that yet eiter.
So, Laying here..hoping I can get up in a bit and do both.
Brain is flaring up or pressure is getting worse
Posted by kam (Member # 3410) on :
Greta..it doesont' make sense bu *** helps to know you go thru this too.
Posted by kam (Member # 3410) on :
steve thanks...sorry ouu go thru this too
Posted by kam (Member # 3410) on :
I also need to get up and pull the shades or blinds when able in my bedroom and the rest of the parmtne
Posted by kam (Member # 3410) on :
Able to make a pitcher of the lemon drink to help with hydration...body got the chills durng trying to amek it and i am still very cold now even tohugh I have a down comfoter on and ti si not cold out.
able to close the blinds in my bedroom.
resting now, then hing to get up and get something to eat...and take tramadol and gabapetin
Posted by kam (Member # 3410) on :
Got an email from the accunpuncturist. She is coming today at 11 am in our community room.
Very nice of her to do this. Tehre goes a weeks worth of groceries for next month though.
But, righ tnow, it seems worth it if it helps.
Posted by Lymetoo (Member # 743) on :
That's a lot of money. Maybe it will help calm things down.
Posted by kam (Member # 3410) on :
It is $70 tutu
able to eat but if my brain were a balloon it started blowing up agan from getting up to fix something and from eating..hoping it goes back down now as I lay here.
Posted by kam (Member # 3410) on :
slept most of the afternoon after the accupuncturiest left
i still feel like i coudl sleep some more
i still have pressure/pain in the brain but not as bad as yeseterday
mostly i was able to feel my limbs after th accupunturiest left and while seh was here..whole body was in pain...noticed the limbs started to feel almost normal..nice
Posted by momindeep (Member # 7618) on :
Been thinking and praying for you. I use acupuncture and have for years...I think the benefits of a good practitioner are worth every cent.
Posted by GretaM (Member # 40917) on :
Hi Kam,
I hope you are able to sleep soundly tonight.
Acupuncture helped me with insomnia, maybe it will help to distract your brain from the pain so you can sleep.
I know exactly what you mean Kam. When the head pain debilitates me, I beg for mercy via death.
Literally lay there and pray for death, for some relief from the pain. The pain makes me paranoid also, and I feel like all of us with lyme are just big science experiments under observation.
But when the pain subsides, I go back to wanting to beat lyme and make a difference with the denialists.
It is weird what pain with do to thought processes.
I wouldn't wish the kind of brain pain with the nausea and food-choking, and bladder control loss on my worst enemy but it does reassure me that other have also experienced it this bad, and helps to keep me calm.
I am sorry you are in a bad stretch Kam.
I think there is something about this time of year. Last year around this time was bad also for the encephalitis.
Do you feel like the brain swelling is a shadow you cannot shake off? Even on the good days, there is a 'something not quite right' with the sensation in my head...
Anyways, hope you are able to stay hydrated and get some food in you.
Sending prayers and hugs and also daydreaming about our Shade Tree we rest under when the going gets tough.
XOXO Greta
Posted by Lymetoo (Member # 743) on :
Sounds like the acupuncture helped the pain and relaxed you some! YEA! Hope it at least lasts through the night!!
See you tomorrow for a new day. Let's hope it's a good one!
Posted by kam (Member # 3410) on :
I had about an hour lsat night where the brain was also just about normal bu then it started up again..but just the usual pressure I always have going on.
Tying this with eyes closed.
Greeta, it was last year at this time that I also had a really bad time of it with the brain inflamation. too.
I only know this as a friend from CA came and we went to some cabins about 30 min from herre.
She sent me an email and let me know it was this time last year that we did that.
I had been going thru several days of the brain stuff and It broke right before she came.
I was the closest to throwing in the towel than I had ever been with this. I was too sick while going thru it to do anything unless I had a gun.
So was waiting until it was over and then had planned on figuring out how to end things so i would never have to go thru it again.
Even while at the cabins aing on the cot on the doors I keep wondering if it was worth it..I was still remembering how it was with the pain. .and life with lyme.
But, here I am a year later.
Pressure in the brain again thisa m. HOping to get up and get dressed and drive up one of the hills to let Rosie do her business.
Lately while I have been there, I wished I had a better way to transport my power chair so I could cruise around on the undevleoped housing track streets with Rosie.
Or that my health would get strong enough to load the power chair on the lift on the back of the car, unload it, load it and unload it again.
I usually can only cruise around for 10 min in the small upright chair.
I think I would be able to last longer in the large big boy power chair but tha tone will not fit on the lift.
Bottom line is I am wondering once again if I could get out of the aprtment more if I the brain stuff would improve.
Time to go camping..and see.
Ringing in ears was louder than normal yesterday and again today.
That seems to be a bit better when I am out of doors too.
So thankful for the accunpunturist actaully coming to the apartment complex.
We were planning on using the community room but there was too much traffic coming in and out so she came to my apartment and I laid in bed.
The back stuff was OK.
But, I was uncomfortable whe it came to havin to lay on my stomach for treatment.
She wantee some feed back from what I could understand but I ws too out of it to give her any feedback.
She said a few sentenes to me but I could only take in a word here and there.
I did understand she wanted me to eamil her so I wil do that and let her know I was only able to take in a word here and there when she was talking.
So much of the time I can't reall explain what is going on. My bdy and brain just shut down.
I dint' even know that my whole body had been effect by the brain stuff until she started with the accupuncture and I started to be able to feel my limibs again.
Posted by kam (Member # 3410) on :
head stuff again this am. took 2 excedrin. hope it helps.
Posted by momindeep (Member # 7618) on :
Will pray for you.
Posted by kam (Member # 3410) on :
thx. so far the exxcedrin nad the cold morning air have helped.
Hope I am not making it worse by using the braint to try and do a few things
Posted by GretaM (Member # 40917) on :
Kam-Are you able to eat a bit of food today?
Posted by Robin123 (Member # 9197) on :
Hi Kam - sorry to read about your struggles here - just curious - have you been able to figure anything out about what triggers your head stuff? And the converse - what eases it?
Posted by poppy (Member # 5355) on :
Are you getting ANY lyme treatment? Prayers are nice, but it doesn't sound like you are getting any treatment apart from some supplementary things like acupuncture.
Posted by kam (Member # 3410) on :
i have an appt in Oct to see a LLMD. Hoping health allows me to handle the trip.
A friend is driving me.
When I had a LLMd I asked him about the brain inflamation stuff and he asked me what I thought was causing it.
Posted by kam (Member # 3410) on :
It is a guessing game at this point as to what is causing it.
Posted by kam (Member # 3410) on :
Primary care doc and anotehr couple of docs I saw wante dme to do an MRI of the brain/spine with and without contrast...but health couldnt handle it nor could my poscket book.
I dont' think taht is the answer. I think it would just rule things out.
Had the MRI of the brain when I first came dowwn sick.
Posted by kam (Member # 3410) on :
Able to eat the past two days. STill have pressure/pain in brain but nothing lie it can be at this point.
Hoiping it lets up soon.
Posted by Robin123 (Member # 9197) on :
Re the doctor asking you what's causing your head inflammation, um, isn't it Lyme that's doing that?
Have you ever taken any remedy at this point that helps ease your symptoms at all?
It's not your physical head, is it? I had cranial work done that eased head bone pain.
Posted by kam (Member # 3410) on :
Would medicare cover cranial work?? I am sure it would help.
But, I am behind now and making payments on my share of costs for what medicare did not pay..cuts into food budget.
Woke up with a clear head this am. Rare indeed and very nice.
But, it is starting to flare the more I try and do things. So veggie now.
Posted by Robin123 (Member # 9197) on :
Medicare would cover cranial work as long as it's done by someone covered for Medicare, like a chiropractor who accepts Medicare and knows how to do it, for example. You could call around to see if there's anyone in your area.
Do you keep any kind of daily diary to see what helps or exacerbates symptoms? First step is to see that pattern, next step is to come up with strategies to help/not hinder.
Posted by Lymetoo (Member # 743) on :
kam.. Did you have a positive Western Blot once upon a time?
Posted by kam (Member # 3410) on :
Robin...I live in a small town...but I will look into it.
Good to know medicare might ocver it.
It is rare I can use the phone so will see if I can find some business on FB and eamil them.
Tutu..yes..in 2003 after 2 yrs of eeing doc and searching for answers an ID doc knew enugh to test me via igenex. I then saw a lyme specialist.
Posted by kam (Member # 3410) on :
Took 2 excedrin this am arond 6:30 am...taking excedrin in the am is th enorm.
But, the pressure is bldg so asking for prayers so I can get some releif.
Just put the intnse muscle spray on head.
Getting up now to get some ice packs.
Going to see if I can watch a moive and hoping that will ehlp at least take my mind off of things.
I had a moment yesterday when I felt just about normal as I lay in bed. it was a werid feeling.
I knew once I got up that "normal" would go away.
REalizign now, the "noraml feeling was due to not having the inflamation in the brain for a while..it was very nice. ..need mor eof those meoments.
Posted by kam (Member # 3410) on :
OK Sent an email to one place in town. They were not the one voted the best chiro in town.
I'll have to do my research and see what the name of that business was.
But, they had a web site so I was able to send an email.
I do know that they had an office in town but moved it to their residence.
And it is less expensive than the accupuncturist.
Posted by kam (Member # 3410) on :
OK Able to find the chiro/accupun..spp? taht was voted the best thsi eyar in town
they are not open today. no web site but a facebook page. I think I sent a pm in the past but it wasnt' answered. i look into it again.
Posted by kam (Member # 3410) on :
OK Sent them a message via FB
Posted by kam (Member # 3410) on :
Forgot to ask them if they did crainial work. I just asked if they took medicare.
Posted by Robin123 (Member # 9197) on :
It wouldn't hurt to ask about both Medicare and cranial work in your text, because what if they don't do it but they know someone else who does?
So I'd suggest asking do you or anyone else you know accept Medicare and do cranial work.
Very important to keep pursuing the possibility of cranial work. I've had it done and it's been powerful.
Again, we never know till we try something whether it's going to work.
So you do better lying down than up, re your head symptoms? Just still trying to understand what makes it better, what worse, because I've long thought symptom relief is so important for us, whatever we can figure out to do.
Posted by kam (Member # 3410) on :
i thuoght i was doing better...got up and able to make the pizze and take rosie out to toilet
but laid back down and head is being weird.
putting ice pack back on but i think i will be ok today
Posted by kam (Member # 3410) on :
robin..tried to read fyour post but tha tpart of the brian is not working..i'll try again later
Posted by GretaM (Member # 40917) on :
Praying for you Kam.
You are doing a good thing taking Rosie out. I am sure she can sense how hard it is for you.
Posted by Robin123 (Member # 9197) on :
Good for you for taking care of Rosie through all this. You deserve a hero award, or is it a hera award for females?!
Posted by kam (Member # 3410) on :
Woke without the pressure/pain as intense. But, thinking I will still take a cople of excerin to help me be able to do a few things aroun dhere this am.
Got email from one of the chiro's in town. Sh eseceduled a 5 pm appt for me yesterday. I was able to go.
She does take medicare.
She wants me to come back on Saturday. I was just able to pic up a word here and there.
Saturday she wants to do bio something..which means i need to be able to sit uprigh tfor 4 oor 10 min and it will help undertand more how my body is processing nutrition.
For some time now, I have felt the body is really not doing a good job of that.
AS I lie ther ethe head pressure/pain is building..so weak this am. weaker than usual.
Posted by kam (Member # 3410) on :
Vision is not good this am as far as being on the computer ..typing thsi with eyse closed.
Posted by Robin123 (Member # 9197) on :
Good - see if the chiropractor knows anything at all that could help you. And please keep looking for the cranial person, basically to rule it in or out whether it's affecting you.
If you have vision problems, have you tried drinking mangosteen juice? Again, not everything works for everyone, but just to find out.
Posted by kam (Member # 3410) on :
Wondering if it is the meds that cause me to wake up with one part of the head stuff. Beginning to see there is several things gong on with the head stuff.
Wtg for excedrin to kick in. Taking tramadol, gabapetin and temezepan. Gaba and temeezaepan at bedtime along with magnesium.
Going to try and some how lower dosage to see if it helps.
Posted by kam (Member # 3410) on :
Robin. She said she does cranial something..she added words to it which I couldn't take in.
I was taking xango at one time and really liked it.
But, it si not in my budget. I have just enough for food each month and sometimes don't have enough for that. No extra's.
I think it was $100 a month for xango. Just about a week's worth of groceries.
Posted by kam (Member # 3410) on :
Robin...I am bedridden 90% of the time. I do try and get up but can't be on my feet or upright for very long ...est 6 or 10 min.
For some reason I do better when moving in the car. I can drive the 3 miles out to the forest area on the backrorads.
Posted by kam (Member # 3410) on :
Laying on ice pack on back of head. I'd have one on my fore head and top of my hand but not doing well enough to figure out how to get them to stay ther ethis am.
I have an appt in an hour with the chir for the crainial stuff.
Took 2 excedrin at 5:30 am
Praying this goes away soon. AMEN
vision is also an issue. Cosed all the blinds which helps.
Posted by kam (Member # 3410) on :
called and left meesage for doctor that chiro suggested.
She is a neuro muscular skeleton doc and D.O.
1st mesg was to see if she takes medicare.
ASked to email me or text me but usually people just call and since I can't use the phone it goes into the black hole.
So might have caregiver call the office on Tuessday when she comes.
Concerend about having another $200 plus bill to pay for my part that medicare doens't apy and the same things done that have been done in the apst but ddint' really make any difference.
WAsted money. Told neuro this when I saw her and before making the appt. I was ignored...she shoke my hand and billed me adn medicare...my part was $150 on her bill
She is not longer practicing in town but she was part of a corportation so I am still getting the bill plus $30 added to it each time.
Posted by kam (Member # 3410) on :
went to chiro this am. She did this tap , tap tap thing on my back and brain...I think I heard the word disaster
She wants me to come back on Tues.
Wondering what my part of the bill is goign to be. I think she said from $5.00 to $10.00.
But, if she has me coming several times a week this could add up quickly.
She wants me to do some kind of exercise...swimming was mentioned..
i could send antoher email to the PT place. I did not get an answer last time.
But, I was paying out of picket lst time for amonthly feet and was only able to go twice a mnth for 10 min.
I'd rather go for a wlak in the forest if I am able.
I think I will try atht again when able.
Or see about a reclining sit down bike I have sen ..but cost is a factor here too...
righ tnow, the brain/pain is too much to think.
Posted by kam (Member # 3410) on :
11:45 2 more excedrin
got the depends on but hopng I dont need them
also put some of the intense muscle spray stuff on..spraying is not working so just used my hands to put it on..fingers...i think i need mor eof it on but don't want to get up right now..need to lay here and settle a little
then i'll get up and get som e liquid..also dehydrated
and stuff up..
Posted by kam (Member # 3410) on :
hat this...hoping the excedrin gives me a break and ends this
Posted by kam (Member # 3410) on :
excedrin usualy kicks in by now.. Posted by Lymetoo (Member # 743) on :
Hang in there, kam! Been drinking enough fluids today??
Posted by kam (Member # 3410) on :
1 more hr to go then I take the sleeping pill and gaba and hopefully get a break from this. Wake up able to do a few things.
Goal is to get out o fthe apartment and set up camp next week to see if it helps with health.
Posted by Robin123 (Member # 9197) on :
Get out of the apt? You think you're reacting to it as in chemical sensitive? If so, there's a lot of precedent for sensitive people camping out instead.
Good for you for at least seeing the chiro - that may be a step in the right direction if anything she does helps. If not, well then you've ruled it out.
She probably said cranialsacral - that's the whole system. You just need the cranial check. Ask her for her feedback too, what she's finding. It could be useful info for you.
$5 or $10 is pretty good, as payments go - so just watch it.
Yes, follow up re the doctor the chiro recommended, but do watch finances. It's best to have coverage.
Do you feel better hydrated than dehydrated? Have you noticed that being dehydrated leads to any symptoms?
So did your eyes do better with Xango? That's the pure juice. There are cheaper juice blend options. I like the Mango-Xan one - that will run you around $20/month. And there may be others in any nearby healthfood stores, if you have them? The juice is also anti-inflam in its nature, so just good for us.
Interesting that you said you did better with movement in a car. Wonder what that's about, if anyone knows, re Lyme symptoms?
See if you can come to understand what each interaction does, whether your private actions or with others. If you're going to see an LLMD in October, it would be really helpful to bring that research to them - it will give them more info about you to work with.
Don't know if it would be helpful to have a diary to record your observations or whether you can just remember how you respond to stuff.
The whole point of this discussion is to keep moving forward with investigations, to see what helps. And at your own pace.
Posted by kam (Member # 3410) on :
Woke this am wtihout the over the top pressure/inflalmation/pain in the brain.
Still have the constant flu like cold like symptoms and other things going on.
Took one gabapetin last night and one sleeping pill.
Did not get much sleep last night until I took the 2nd gabapetin about 3 ish ...then nodded off as I listened to wild africa on netflix.
Woke around 4:30 ish or 5 ish.
Vision is still not good as I look at this screen and type.
I'll be back to read what others wrote when able.
Posted by kam (Member # 3410) on :
Robin...not able to take in all that you wrote but you were on my mind and I was hoping to find your post to read.
It was good to see you had posted another one.
Because I was curious as to what this chiro stuff was about. She is doing the full body thing.
She swichted tools this last time so it only makes one tap instead of the tap, tap, tap..I was going to pu in tmy ear plugs ..dang air conditioning unit outside my window just turned on..i have 4 under my window for 4 different apartments ..one seems to run all the time..having trouble typing now so need to get up and close window to shut out noise.
What I meant about moving in the car is I can last a bit longer if the power chair is moving me or the car while slouching or sitting upright..usually slouching
vs just trying to slouch while I am still...
same with standing..can't just stand..need to move about and then both things are very limited on how long I can do this.
Need to fnd a way to communicate via phone so i can make the apaprt with the doc she remommened..
or perhaps drive to office and talk with them in person..depending on what their hours are..
at least if I drive there they might have the hours on the door so I can see if they are open when my health is working well enough to walk in.
i set up what is called purple relay on my computer and on my cell phone but the brain usually is not working well enough to do what is needed to communicate that way also.
i am able to type away this am as i took a couple of excedrin..that always helps.
but doctor's offices are not open at 6:30 am and by the time they open...my brain has gone out to lunch without me.
Posted by kam (Member # 3410) on :
last time i had the bad brain stuff..i went thru the change in the braint oo that makes things appear as if i have been lving daily for years with the brain stuff and don't want to go thru it again.
my mind went thru different ways i know that people have thrown in the towel..but none i would do..as i want to die a peaceful death.
and i would not leave Rosie, service dog like that. i would make sure she is ok first.
so i do need to make an appt with the local doc and see if she might have something that will help during these times
Posted by Robin123 (Member # 9197) on :
I wonder if the chiropractor is using an activator or an arthrostim on you - both can tap the body.
Do you know if she also did any cranial work on your head bones?
Well, maybe you will need to do a walk-in to coordinate times. Whatever it takes...point is, keep going with this outreach to the practitioners.
If you are going to see the LLMD in October, it will all help them understand your condition better, as in what helps, what doesn't.
Better to not give up too soon - something down the line might work.
Posted by Robin123 (Member # 9197) on :
I talked with a medical professional today. He said dehydration can cause headaches, also lack of minerals.
Water intake should be body weight divided by two, in ounces -ie, if 200 lbs for example, divided by two to 100 ounces. A cup is 8 ounces, so at least around 12 cups of water a day. Could also be as juice.
The first two cups of coffee provide water, then each after that is subtractive. Drinking tea, he said, does not count.
Minerals can be taken in liquid minerals drop form.
If you can swing it, to do as many of these experiments as possible before you see the LLMD on October so you can report on what's helping and what's not, at least as far as you're aware.
And hopefully to find someone in the community who can do the cranial work experiment with you. I experienced it as providing a great deal of relief from whatever head symptoms I was going through.
Posted by kam (Member # 3410) on :
Woke with the head stuff this am. Hoping that it will go away.
Prayers appreciated. It is not as bad as it can get at this poing and praying it does go away asap.
I have a chiro appt tonight so hoping that helps. Last time it did not help that day but the next day it was gone I think.
Posted by Robin123 (Member # 9197) on :
Hi - if you can recall what happens during and after each modality you try, great. If not, it might be helpful to keep a small journal.
Can you ask the chiropractor what equipment they're using on you, also whether they're doing any cranial work?
When I had 25 undiagnosed years, I tried all kinds of things, and I always asked what it was. We need to know what helps us and what doesn't, to build up understanding, is my view on it all.
Posted by kam (Member # 3410) on :
1 more hour to go then the sleeping med and gaba and hopefully sleep.
hoping to wake up with this gone.
chiro's office had a note on it saying sorry closed...sorry for any inconveneince (SP)
Posted by Lymetoo (Member # 743) on :
Sleep well, kam!
Posted by kam (Member # 3410) on :
Robin...my brain is out to lunch most of the time without me.
I do know she was using something that made a tap, tap, tap sound.
But, then switched to a tool that just made one sound as I started to put in ear plugs before the session.
Brain flares up with sounds
Posted by kam (Member # 3410) on :
Thanks tutu.
I did sleep thru the night. Woke at 5 am. not sure when i fell asleep.
brain was ok this am. But, took 2 excedrin at 6 am as i was in pain and wanted to be able to do a few things this am.
I know it is probably not good to hav e my head or neck like it is as I layin bed all day.
I prop pilows up and go back and forth from watching TV to playing mindless easy to see games ont he computer just to take my mind off of how i feel daily.
I considered getting one of those table that to put my computer screen on and moves the screen in front of you...but think the best way to go at this point is to get a lap top when i am able ...computer is being werid and is old ...but it is still gettign the job done so thankful for that.
not sue why i was in so much pain this am..more than normal..usually in taht kind of pain when I have been on the trail for 5 min or moving about a bit more than norm but no movement yesterday.
Posted by kam (Member # 3410) on :
Woke at 3 am with the inflamed/pain/brain stuff.
Took a couple of excedrin at 4:15 am.
Prayers this goes away soon.
So far three trips to the toilet due to loose bowels taht seems to go along with this pain in the brain.
Getting depends on now as in the past i haven't been able to get tot the toilet in time
better be safe than sorry
i was hoping to set up camp this am as i use to ffel i felt better outdoors.
body hurt more because of moving about
but the brain stuff was less i tink
haven't been able to be at camp long enough to really know yet.
i was hoping to camp for 4 nights this time.
i recall i had the finalmbed brain lst tuesday. the stuff that cahnges the thinking to how did others take their lives and how can i do a peaceful, painless death
but then i have rosie and i don't want to do that to her. i would need to find homes for rosie and the cat first.
so asking for paryers to help me get thru this and for it to stop so i can ge to the campground and see how i doo.
also prayes that i have what it takes to fill out the form for a local doc and that she does help.
gettign to the primary care do i have now isn't really do able
she is an hour or two awway and i dn't ahve anyone to drive me there.
i see a llmd next month.
a friend from out of state is coming to drive me there ...doc is out of state..prayers my health can handle the tirp and that all goes well.
loosing hope
Posted by kam (Member # 3410) on :
also have ice pack on brain
Posted by kam (Member # 3410) on :
i don't know how long but i am bedridden for th emost part with the computer next to the bed. I paly monopoly and cananast on pogo games and watch tv...brin can't do much and either can body i do drive rosie out to the forest area 3 miels away on the backroad trhru housing developments in town at least once a day
we usuallly are there only 10 min but htose 10 min make a big diffrence.
i also get out of the aprtment to toilet rosie int he power chair but usually don't leave the aprtment grounds...i use to be able to go around the block but not any more..can't be upright in the power chair long enough to go around the block.
dang ..got to make a trip to the bathroom again...trip 4
Posted by kam (Member # 3410) on :
not able to talk to neighbors or be on the phone to even make business calls. that part of the brain broke down when i first came down sick in 2001 and has yet to get fixed.
not able to use relay service as it is too much for the brain
Posted by kam (Member # 3410) on :
dang..another trip to the bathroom..loosing count..rough way to clear out the system..being in pain
Posted by Jane2904 (Member # 15917) on :
Sorry you are not feeling well, Kam.
Hope it passes quickly.
Hugs
Posted by Lymetoo (Member # 743) on :
Praying that you feel better later today!
Posted by kam (Member # 3410) on :
I think the awful stuff in the brain is gone...I hope.
But, something is going on.....i have the usual wekaness ..more so than baseline after the pain stuff
but something else is going on..the body being so over tasked movin git not a good idea adn maeks things owrse as well as the chills or coldness.
just yping this out to think via th ekeybaord and keep afloat
had some applesauce...need to get up and get some tea when able and ?
Just waiting for this to pass too. Breating is not back to baseline yet
trips to the bathroom have slowed down
increased flu/cold like symptoms I guess..I have them all the time but to different dregrees
Posted by kam (Member # 3410) on :
10:20 am just trying to stay connected and afloat
weird stuff stil going on...funny because if i were well and going thru semthing like this i would go see a doc or go to the ER...but with lyme and company we have learned that just makes things worse unless the doc is lyme literate
got something to eat and took tramadol and gabag
still would like to atke a shower and see if it helps...very uncomforatble in my own skin right now..but i think it would rock the boat so watg it out.
Posted by kam (Member # 3410) on :
Wondering if it was due to intestines needing cleaning out this time.
I also keep getting the smell of my neighbor and firneds on her patio cigareeete smoke.
I have my bedroom window closed but the screen door is open and the front room window. I know she doesn't alway sleep at night and sits on her patio at night time smoking too..I had my bedroom window open last night and the other windows.
Getting up now to close all the window. I think. I will check temp first. I am hot and sticky in bed but dont' alwasy trust my termperature body guage...i was cold and had the chills earlier.
Could also be the peaches I had yesterday...fruit equals sugar..had frozen peaches..i thought i would be ok if i just had a few
i know i need to get the stuff to help with ..dang can't think of the name now...frluconoze or the diflucan...but getting to the priamry care doc down the hill is too much
hooping to find loacl doc to help
need to be doing wlell enough to fill out the forms first then an appt can be made.
also i have an ppt in oct out of state to see llmd so adding diflucan to the list
Posted by kam (Member # 3410) on :
The inflamed brain stuff is not going away so once again asking for paryers. It seems to be getting worse. Ic epacks are not helping.
Getting up to put the intense msucle spray stuff on tempses etc to see if that helps.
i trid to do what i wanted to do insted of lstening to my body and brain this am .
I forget it makes things worse at the moment.
I recall later..after the fact...i live in the momentn with this most of the time.
It is 11:45 am now.
Posted by Dekrator48 (Member # 18239) on :
Praying for relief for you, kam!!
Posted by kam (Member # 3410) on :
thanks dek
2:30 pm...breath in breath out
I know I went many hours without eating yesterday..ate in am and then again at bedtime...
difficult to know what causes the inflamtion..guessing game...
most likely not just one cause
Posted by Robin123 (Member # 9197) on :
One person I talked with said even just hydration matters re headaches, so to make sure you're drinking enough - and obviously, Lyme could be doing a number too -
Did you ever find anyone to try cranial work with you?
Posted by kam (Member # 3410) on :
I think I am OK now. But, I did notice this am that the pitcher of lemon cucumber drink I try and drink each day is just now needing to be replaced.
The caregiver made it on Monday and today is Wed so I haven't been getting as much of it down as I usually do.
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