Tracy9
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posted
I woke up about two hours ago from a 16 hour sleep. I feel like I can't breathe; it feels as if I am just too tired to breathe. I think my bp must be really low, am tachycardic too.
My husband is being his usual underreactor. I barely have the energy to get the words out, and so far I have asked him about six times to take me to the ER and instead he is trying to get me to take my son's asthma inhaler, he is googling things, asking me if I want him to massage my shoulders....
I am getting extremely frustrated. I am so fatigued I cannot move and breathing feels like too much effort.
About three weeks ago I was taken off Mepron, Zith, Plaquenil, Bactrim and Actigall because my LLD was seeing no change. I seem to be now sleeping at least 16 hours a night. I am so fatigued it is hard to even get to the bathroom.
I dont' like feeling like I can't breathe. Any suggestions other than calling 911 myself???
Im sure he will take me if I insist. Should I insist or am I overreacting?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Sammi
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posted
Hi Tracy9. I am sorry you are experiencing this.
If you feel you need to go to the ER, you need to go. When breathing is an issue, you do not want to take chances. If your hubby will not take you, call an ambulance.
What is your doctor's plan since taking you off all meds? How long have you been getting treated and how long were you on those meds?
For me, the horribe fatigue, breathing problems, and heart-related symptoms were from Babesiosis. Do you think this is what it could be?
I do not think you are overreacting. Please have this checked.
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sixgoofykids
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posted
It might not be enough, but tonic water always takes the edge off air hunger for me.
What does your LLMD have you on now?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Carol in PA
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posted
Tracy, Get some liquids into yourself.
If I were there, I would check your color, your blood pressure, pulse, and respiration.
Are you sweating? Any chest pressure?
Chew up an aspirin. (In case it's heart attack.)
If it were a blood clot to the lungs, you would have pain, difficulty breathing, coughing.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Tracy9
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posted
Just Ceftin, 1000 mg BID. I think I am struggling because he took me off the Babs meds. Also after sleeping 16 straight hours I could be somewhat dehydrated, Blake said.
I'm really too tired to even go to the ER, I swear! I may just go back to sleep even though I've only been awake for four hours.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Be aware that the symptoms for women having a heart attack are often different from those of a man, but any of the following symptoms can occur in men and women:
Classic Symptoms
* Squeezing chest pain or pressure * Shortness of breath * Sweating * Tightness in chest * Pain spreading to shoulders, neck or arm * Feeling of heartburn or indigestion with or without nausea and vomiting * Sudden dizziness or brief loss of consciousness
Symptoms More Likely in Women
* Indigestion or gas-like pain * Dizziness, nausea or vomiting * Unexplained weakness, fatigue * Discomfort/pain between shoulder blades * Recurring chest discomfort * Sense of impending doom
posted
Tracy, trust YOUR gut on this, nobody else's.
If you can't breathe, then go to the ER.
So what if you are "wrong" and your vitals are all fine once they check you out. That would be great news. On the otherhand, they will monitor you and keep you safe.
Take care of yourself like you do your son. You wouldn't take the chance on his health, so don't do it to yourself.
Feel better.
Posts: 103 | From Northern VA | Registered: Apr 2009
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sixgoofykids
Honored Contributor (10K+ posts)
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posted
For sure you need hydration. Keep a large glass of water by your bed so when you stir you have something to drink. I always kept about a quart by my bed.
Is he going to add more? I would agree that if you are having babs symptoms returning after stopping babs meds that perhaps you needed them.
Truly, the tonic always helped me ..... if I was off babs meds for whatever reason, I drank a lot of it. I even drank it shortly after starting the bionic treatment ..... when I went to Italy for two weeks, the babs symptoms hit so hard I could hardly function, but if I drank two cans of tonic per day (comes in soda cans there in the soda machines, LOL), I was fine.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Tracy9
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posted
Carol, I have no way to check bp and stuff because Ryan is at work. I gave my brother my home pressure cuff after he got out of the hospital, recently bought a new one but it is totally inaccurate. If I use it three times in a row I get way different readings, and Blake can't find it anyway.
I will chew an aspirin. No chest pressure, just feel like I'm too fatigued to breathe, like it is a huge effort and oxygen isn't getting in.
No sweating. Drinking water. Blake keeps trying to push Cody's inhaler on me and I keep telling him my heart is already pounding fast enough!!!!
No coughing, some chest pain off and on over the last few days but none right now.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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posted
Blake can't find the aspirin, even though he is supposed to be taking one a day. I try not to get mad at him....but he is so inadequate to put it nicely.....I know it's his neuro issues.
I guess I'll go to the ER. From past experience it's quite possible they will admit me which won't be fun.
Blake has now agreed to take me if I let him take a bath first. We are also in the midst of a huge thundrstorm right overhead, so I'll have to wait for that to pass.....
I'm even too tired to gather things to go to hospital, very unlike me. Usually I would never go without my slippers and robe!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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seekhelp
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Member # 15067
posted
I'm sorry you're feeling so terrible Tracy. I agree - go with your gut. From the posts I've read in the past, sometimes you seem to not take things as seriously as I would (which may not be bad and save you $$$ and hardships).
THis said, if this is bothering you this much to be concerned, GO TO THE ER. You shouldn't have to convince your spouse!!!! Been there though. Eventually I got a ride though. It's the boy who cried wolf syndrome I'm accused of.
Sleeping 16 hrs a day is NOT a good sign at all and seems very serious. People just don't sleep like that. I wish you the best. Your LLMD shouldn't have taken you off meds either if you have Babs and this many health issues. That loses me.
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Tracy9
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posted
I am so extremely fatigued I think I will go back to sleep for a bit and then see.
I think it may be babs stuff because LLD recetnly took me off my babs meds. I have a call into his cell phone as well.
When my son gets home from work ( 1 am, he is an emt) he can check my vitals and go form there.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Member # 7521
posted
Tried to get him to come home but he didnt'. I woke up a little while ago, obviously he must be home but my symptoms have abated a a lot.
I think I was really dehydrated from sleeping 16 hours with no fluids. I have drunk a ton of water now.
I think my recent stopping of the Babs meds is setting off this unbearable fatigue. I cannot even give Cody his meds and end up arguing to get Blake to get up and do it.
I feel like I can breathe okay now. I am just so profoundly fatigued. Back to sleep.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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lymetwister
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posted
Tracy,
If it's any comfort, I can relate to what your going through. I was just in the ER yesterday for similar.
I woke up with what your describing. I felt like I had to regulate every breath I was taking. Not sure if it was true air hunger, as I've had this present in several forms now. I also felt like each breath wasn't satisfying and I needed more air.
Then it changed over to a terrible anxiety situation and before I knew it I couldn't catch my breath and was doing the rapid breathing crap.
On top of it all, I was having pain in the chest.
I attribute all of this to the IVIG. Not sure if I'm killing or if it's a side effect. I would think I'm killing or stirring up the pot as I can't find anywhere anyone having this type of rxn. from IVIG.
Regardless, I've had those air hunger attacks in the past and they are very scary.
I think I've hit my 20th ER visit now in the past 18 mos. Funny, as my HR was way down all day yesterday in the 50's for the most part and now it's back into the 70-80's.
I'm finding that increasing my Klonopin is helping me with this today as I awoke with it again.
If your sleeping so much, that might not be a good solution for you.
Once again, my thoughts are just how bad this disease sucks.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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EtherealGirl
Unregistered
posted
Tracy, I'm glad you're feeling better but I think you have sleep inertia. You are getting WAY too much sleep! Can't you even get up and sit in a chair for a little while? Your body needs movement and nourishment. Blake should wake you every six hours to give you something to eat and drink.
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kam
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posted
I had times like this before being dx and after being dx and starting treatment.
I did have a friend take me to the local small ER. They were of no help.
But, the quiet of the room they put me in, the coolness and just reclining helped me enough to get back home and know that I would not go to the ER again when this happens.
For me, I have learned it happens when I have over done it and I need to just wait it out.
It is as if the diaphragm is too weak to get the air in and out of the lungs. A very scary feeling.
It would help if you could at least get to the ER...if you were able to get in and lie down.
I have gone to the ER at a bigger place and it was more tasking on the body and brain as I lied in the waiting room in and out of consciousness for an unknown amount of hours before I found myself in a hospital bed.
It was a good thing I went that time as I would have died if I had not gone. I had an infection in my PIC line.
It is a tough call whether or not the ER will help or cause more stress on the body and brain.
As far as inhalers, I had several doctor's try this when I was looking for a dx. I found the inhalers only made me worse.
Kind of like we we try to exercise....instead of helping it can set us back several days if the body is not ready yet.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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Member # 3410
posted
Tracy...just scrolled up and noticed that you had added an update.
I had not realized there were 20 posts on this topic when I first responded. Only read your post.
Glad to hear you are at least able to breath now.
Take care of you as best you can.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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bettyg
Unregistered
posted
tracy, thx for update.
with your being at luvdogs arranging baby things galore, taking care of baby liam, etc., you were running yourself down, and your body is just telling you to SLOW DOWN and smell the roses.
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Tracy9
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posted
Update for Sunday; just woke up at six pm. I have slept almost round the clock for the past two days. I am profoundly fatigued; I cannot even get up.
I have increasing pain under and behind my lower left ribcage. I ate a banana and it caused a lot of pain. At my last LLD visit he was very concerned that my Amalyse had gone from 13 in one month to 138 the next. This pain made me wonder if I might have a touch of pancreatitis?
My husband is waking me up and forcing me to drink through a straw. I ache all over and am still having shortness of breath. I am tachycardic as well. The lowest my pulse has been is in the 90's.
Frankly I feel way too exhausted to even go to the ER but I think I need to be checked for pancreatitis at least; what do you guys think? I dont' see fatigue listed as a symptom; anyone with experience?
I have definitely experienced these 2 to 3 day sleepathons as part of a herx. But I have recently been taken off so many meds it worries me that Babs or Bart are coming back (in the last 12 hours the soles of my feet and calves are now aching too.)
I hadn't had the shortness of breath or tachy before in these sleepathons. My BP, checked by my son this morning, was 107/70. I'm sure it was much lower last night and I'll have him check it again.
I guess ultimately I will go to the ER but I don't know how I am going to do it
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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lymetwister
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Member # 19590
posted
Hang in there Tracy, I'm sure it will all pass in time.
More evidence of how cruel this disease is. No one should have to go through this garbage.
It's insane !!!
When I first started treating, I had Chronic Fatigue and it was terrible sleeping 13 or more hours only to wake up still tired. Then it went away and I developed insomnia.
Now my sleep is more normal, but I'm still fatigued every day, especially with this IVIG if it's even killing anything, who knows.
All of these new cases are now popping up this summer and the IDSA will have to fold when they begin to see all of the relapses.
This is only the beginning... Help is around the corner.
LT
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sixgoofykids
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posted
I don't know what that pain is .... I used to get it, too .... sometimes it was very severe. I thought, but don't know, that it is babs related . I thought it was the spleen.
I hope you get a break soon. Sounds like you need to be on more meds.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Tracy - Have you gone to the ER yet? What is going on? Please get your butt to the ER now! Please..... Remember that you didn't think twice about taking Cody to the ER - you have to value yourself as much as you do him!
I hope you can't answer bc you are in the ER...
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Tracy9
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posted
Yes my luv, I was at the ER and couldn't answer. You know I must be really sick to have not called you or David for two days!!!
But all is well, just got home and I'm fine. The only thing they found was my sed rate was elevated and they diagnosed me with acid Reflux which I did have for some time several years back.
So they gave me some IV Protonix and a script for it as well. I'm home and doing okay.
I slept about three hours in the ER and just took my sleep meds so will be drifting off again soon...I think in all honesty this was either a herx or a combination of a herx and flaring up of Babs and Bart since Dr W just took me off all those meds.
I"m putting myself back on Mepron and Zithromax tomorrow; and starting there.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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bettyg
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posted
good, you went .. at least you found out a little more and slept in ER ...
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Tracy - I'm so glad you're feeling a bit better.
Please keep us all updated and don't forget to take care of yourself.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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Tracy9
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posted
Oh yeah and they did lots of bloodwork, IV fluids, a chest xray, and an EKG. Now if I dont' get to sleep I'm in big trouble with Cobweb....or "tough love" as she calls it.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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