There's only so many times I can say that to "outsiders," but the migraines are freakin' DAILY (and have been for over a year), and I just have to effing SCREAM sometimes, but I don't want to chase everyone away.
So I'm screaming right now. Silently and online (I have roommates), but still screaming. :-(
[ 05-27-2016, 03:53 PM: Message edited by: Lymetoo ]
Posts: 112 | From USA | Registered: May 2016
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posted
So sorry, SLH516! You migraines might be Babesia-related. Babesia is known to cause brutal headaches (I've had them and still get them from time to time).
The only thing that's been helping mildly is using a peppermint oil roll-on on my forehead.
Where do you get your migraines? Front? Back? Whole head? Are there other symptoms that usually go along with them?
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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posted
sorry to hear you're dealing with this, they're so awful.
The only thing I've tried that helps me is advil and valium together. I've tried the stronger stuff(pain meds, imitrex, cbd capsules, various other herbs) and it didn't help.
Mine are one -sided(always the right side) and usually progress to being sick and spending many hours on the bathroom floor.
But the meds have made them more tolerable for me, took me about 15 years to find something that helped.
I hope you find something that helps you.
Posts: 857 | From northern california | Registered: Dec 2009
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posted
The headaches are bilateral, at the temples and across the top of my head. No face, nothing indicating trigeminal nerve so I'm guessing peppermint oil wouldn't help.
One neurologist wants me to do a temporal artery biopsy. I saw someone say they had a negative CT/MRI/MRA (can't remember which) so that meant they didn't have temporal arteritis -- I didn't think it could be diagnosed that way.
I've had all three, and they were completely negative for anything.
Other symptoms with migraines -- almost always light sensitivity, frequently nausea, infrequent vomiting. In over a year I haven't been able to identify any pattern or any triggers.
Over the past couple of weeks my neck/base of skull have started hurting -- I used to occasionally get tension headaches in that general area, but ibuprofen always resolved those, and it has no effect on these.
My TMJ (the actual joint, not the syndrome) has gotten really stiff and sore, and I can't open my mouth all the way without it hurting. My teeth hurt sometimes, too. (Sorry for writing a novel here, Nula!)
Propranolol helped bring the severity down so that I'm able to be up and around for at least part of each day.
A combination of Benadryl/ibuprofen used to help if they weren't too severe, but this past week they've been severe enough that that hasn't helped.
I've tried everything else that western med has offered pain-wise (neither my pain doc nor PCP will give me narcotics of any sort, even for "emergencies," i.e. a migraine that's going to send me to the ER).
Totally off topic -- dogmom2, what kind of dogs do you have? I love dogs but can't have them where I live, so I live totally vicariously through other dog moms! <chuckle>
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(Breaking up your post for easier reading for many people here - best if you break it up into a couple lines at a time - thx)
[ 05-27-2016, 04:13 PM: Message edited by: Robin123 ]
Posts: 112 | From USA | Registered: May 2016
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posted
OH, do I ever hear you! I've been diagnosed with chronic daily migraine at this point, with the reason on record being dystonia.
(My neuro is Lyme friendly, and doesn't write off the possibility that the dystonia is caused by Lyme or coinfections.)
I get botox for it ... I know, it's a neurotoxin... but it really does help.
I also take sumatriptan (generic imitrex) in moderate doses almost daily -- not the best thing to have to do, but it does control the pain.
Mine are usually unilateral, and start at the base of the head, though. I used to get the bilateral ones a lot, and my old LLNP had me on diamox for a while to help with the head pressure. It helped, but it had a lot of side effects.
I treated extensively for babs, and that also helped for a while, but the head pain and neck/back spasms have returned.
Treating the migraine with a migraine med relieves the spasms, so I think they are secondary to the migraine, really. Hard to say what precedes what.
For purely symptomatic relief, I find an ice pack on the back of the neck does help.
I also have discovered that I tend to get the bilateral head pain when my sodium levels are too low -- salt helps this a lot. Water alone makes it worse, but salt and water help greatly.
This may be a meds effect, or due to weak adrenals ... either way, the sodium helps me.
I hope some of this is helpful to you. I feel your pain, almost literally. I've been dealing with these since I was 20 (I'm 48 now!)
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posted
Oh, two more things. One -- I tried taking topamax as a preventive. I couldn't tolerate it in any dose at all, though I know people who can, and have found great relief from it.
Also -- for the neck and back spasms -- I use a TENS unit, and it is a godsend. They can be purchased very cheaply now, and are well worth the money. I hope you find some relief.
In my experience, head pain is the most debilitating kind of pain one can have -- and I've experienced most of them at this point I think!
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(breaking up a paragraph for easier reading for many here)
posted
The TENS unit suggestion is something I'll keep in mind. Where did you get yours, minimonkey?
Aside from the triptans, which I can't take bec of another med I'm on, I've tried everything western that my pain doc knows of. (My shrink knew of some treatments that my pain doc didn't know of, so I'm not all that thrilled with him.)
I've done 3 rounds of botox with no relief. Topamax = nothing. Memantine didn't do anything. (That's an Alzheimer's drug, can potentially help with memory also even if it's not from Alzheimer's)
There's a thing called cefaly that's a trigeminal nerve stimulator, but my migraines aren't in the trigeminal distribution.
I'm sorry to hear that you've been dealing with this since you were 20, minimonkey! Wow. Sorry that the pain and spasms are back, too. :-(
On a brighter note, this was the first day all week I was able to leave my room, and I even went and took a pottery class that I didn't have to bail on at the last minute! Yay for not having to cancel plans!!
Posts: 112 | From USA | Registered: May 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My doc ruled out temporal arteritis for me with blood tests and a temporal artery ultrasound.
It turned out my headache was caused by temporal tendonitis. It is also spelled tendinitis. See this website:
posted
Thank you, TF! All of that is welcome information, I appreciate it.
Posts: 112 | From USA | Registered: May 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Another suggestion is to check the hospitals in LA. Often, a few major hospitals in a big city will have headache centers.
If you find some with headache centers, look at their headache websites and pick the one that looks the best.
Or, ask your friends on Facebook if any of them have gone to any of the LA Headache Centers and get input that way.
Posts: 9931 | From Maryland | Registered: Dec 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Alinia stopped mine.
Why, anyone's guess! I do have multi strains of Babesia so maybe that...
I still take Alinia as a "cyst buster". I also take Topamax as my preventative. Honestly though, the Topamax was not working well before I started the Alinia.
Edited to add: my migraines were make you want to die debilitating!
Posts: 5237 | From here | Registered: Nov 2007
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"Did you know that gravity can threaten the health of your brain? When you are standing, the brain is above the heart, and blood pumped to the head and brain must have extra pressure to oppose the downward pull of gravity. Meanwhile, blood returning from the head is assisted by the force of gravity.
But, what happens when your head gets too much pressure from lying flat – in your bed – at night? According to Sydney Ross Singer, “lying flat in bed can cause the brain to get pressurized and congested with stagnant fluid, reducing the oxygen and sugar availability for brain cells and increasing metabolic waste products.”
“The brain desperately needs proper circulation or its cells can die. As a first defense, your brain wakes you up so you can stop lying down. However, most people try going back to sleep, so the pressure and stagnation continue.”
“The brain has another mechanism to save itself. Blood vessels that supply the head and brain open widely, temporarily increasing the pressure to essentially flush the brain with fresh fluid. This “brain flush” is painful and is experienced as a migraine headache. It happens in the morning after a nighttime of brain congestion caused by lying too flat.”
The good news is that scientific research suggests that over 70 percent of migraines can be eliminated by simply elevating the head of your bed! "
Posts: 58 | From east coast | Registered: Dec 2009
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posted
Thank you, high brix! I figured it was related to head-vs-heart elevation, but you found some really interesting information. Since my headaches don't go away when I sit up -- they just feel a tiny bit less bad <sigh> -- I don't think tilting the head of my bed will help. However, it makes me wonder even more about the CSF pressure in my head, something that can be measured during a spinal tap. (Never had one, but I've always heard they're really painful.) You've motivated me to voluntarily bring up the idea of a spinal tap with my doctor. When it really hurts, though, don't be surprised if you hear me cursing your name! <chuckle>
Posts: 112 | From USA | Registered: May 2016
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posted
You're welcome SLH516! You wouldn't be the first one to curse me! You have to do what you feel is best for you. I hope you find relief soon. If you decide to try elevating your head while sleeping, you may find the following website helpful
posted
I am probably using it wrong, but I have some bee venom ointment (Venex) that I was using on my arthritic hands, and in desperation during a recent migraine I put a smidge on my temples and forehead. It burned, but it felt like it pulled the pain out towards my skin and away from the inside of my head.
Probably placebo, but it made it *feel* better, which was what I wanted in the moment.
The migraines I get have gotten loads better just with general treatment (detox) and Babs-specific treatment. I wish you luck.
Posts: 243 | From Southern Arizona | Registered: Jun 2015
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posted
Sorry to arrive late to the party but I had to comment -- migraines have plagued my existence for nearly 15 years so I have tried a thing or two.
From every OTC medicine you can imagine, every class of preventative drug, dozens of abortive medicines, Botox, massage, chiropractic, acupuncture, etc etc I have tried them all and nothing has really helped. (CTs and MRIs totally normal, no real explanation for why I have them except being sensitive to gluten, but they still come around regardless of having given it up.)
I was seeing a new neurologist who specializes in migraines last fall while having a terrible cycle of migraines that nothing would even touch. He wasn't helping and I was beyond desperate for help so I figured I would go out on a limb and try this supplement I was reading about called Dolovent.
It is basically Magnesium, B2 and CoQ10- nothing fancy, no magical herbs or ingredients- but I kid you not, I took this supplement and within 2 days my migraines went from constant to maybe one nasty one a week. I could not even believe it.. It is such a basic formula that I started to wonder if maybe this was just in my mind, a sort of placebo effect or even just coincidence.
So when the bottle got close to being empty I stopped taking it to see what happened. Again, within about 2 days the migraines were back with a vengeance. I again thought maybe it is in my mind so I gave it a solid 10 days without the supplement- 10 days of straight agony- and went back on it. Like magic, about 2 days later I had significant relief.
This February I went to my first visit with a LLMD who said the supplement was OK, but he would rather me get on a good quality multi-vitamin instead. He did not recommend doing both, so he said to stop the Dolovent and start the vitamin. I did.. And the same thing happened as before- unrelenting, violent migraines that medication wouldn't even help.
Needless to say I went back on the Dolovent and have no intention of ever being without it. I SWEAR I am not affiliated with this company in any way, but the amazing relief I have had with this supplement makes me want to spread the word. It may not work for everyone, but if you have tried all sorts of things and you're desperate for something new to try, I can't recommend this enough.
Posts: 13 | From Ohio | Registered: Feb 2016
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Claridon,
Glad you found something that works for you. Thanks for sharing that. By the way, this does appear to be a wide range of vitamins / nutrients / minerals with 22 ingredients.
Not sure how this would stack up to other full range vitamin / nutrients, or their methods, etc. though, glad to see it's got some good balance to it and that it clearly helps you so much.
Curious, as I tend to be, glad to see the ingredient list at their site. I'd want to know more about their form / source for Vitamin A & Vitamin E (and I'm sure they would tell me if I asked) but everyone will have their own questions to explore. A good place to begin:
Q: What is in Dolovent? - see ingredient chart [though not clear those leavels are per capsule or per dose - or per daily dose]
[last Q & A - so, up to 4 capsules a day]: Dolovent capsules are taken by mouth: Twice daily, 1-2 capsules morning and evening with or after a meal. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A note about ototoxicity with many Rx used for migraines: many are very hard on liver and also on the ears (in various ways).
Some OTC pain relief can be, too, such as acetaminophen stressing the liver and ibuprofen (hard on kidneys and that, in turn, is hard on liver, too).
A basic way to cross search this is Google:
"Rx name" "Neil Bauman" ototoxicity
Search the Rx name by market name, chemical name and also generic name.
Neil G. Bauman's book: Ototoxic Drugs is an excellent resource that provides detail simply not available in a web search. Some of his research detail is on line; most is not.
When one feels they have no other choice than to take an ototoxic or liver-toxic drug, sometimes, liver support supplements can help - to some degree. But there are no guarantees as to the range of protection when things start adding up.
And, starting that train of thought over: when one feels they have no other choice than to take an ototoxic or liver-toxic drug . . . often there are safer ways. It's just that it can take a while to find those.
It's important to now that damage to ear nerves can be cumulative, not noticed until too late at which point, damage is often not reversible. Such damage can be beyond just hearing loss and also into the vestibular functions such as balance (which affects everything a human does in life, everything). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- SLH,
A gluten free diet helped me so much to calm the migraines (as well as magnesium). I cannot stress enough, the importance of this - for so many reasons.
Along with that, it seems that the Dolovent that Claridon has done so well with would be a good move. DOLOVENT contains magnesium, though, you'd have to check the daily total dose in that compared with optimum. But you'd start with that before adding to it.
GLUTEN is discussed below, as well as common food additives that can trigger migraines, too. Be sure you are NOT taking additional GLUTAMINE / GLUTAMIC ACID. That can really clobber anyone with migraines. The Amino Acid post here explains why:
Topic: MAGNESIUM - Informational Links set -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
quote:Originally posted by sammy: Alinia stopped mine.
Ditto. Alinia hits the fry bug (FL1953).
SLH, I have many of your symptoms (PR and babs for me).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I was researching for a friend's SIL who ended up in the ER a few days ago because of a terrible migraine which would not stop. She does not have Lyme, btw, but does have a history of migraines.
I've read the herb, Feverfew, is considered to be the top one for migraine relief. Btw, I am not a doctor and in no way affiliated with any products, websites or doctors - just trying to help!
I came across this website which is chock full of good advice about migraines, what to use, where to find a doctor, etc. Perhaps you can find help through it.
There are several other herbs listed on the following link which can also help migraines :
Here is an informative article about Feverfew from the same website. Also, scroll down for recommendations in it for specific types/products of Feverfew, etc.:
They have it set up to be able to find practitioners anywhere in the world.
*Note: Make sure you check with your doctor before starting any kind of herbs in case they cross-react with your medications or present possible allergies for you.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I wanted to comment on this thread because I was diagnosed this July with continual daily migraine. I was quite surprised that my continual daily headaches were considered migraine.
Anyway, the winning combination for me was time-release magnesium, vitamin B2, and CoQ10. I buy each one separately. In 2 days, my continual headache from the beginning of May was gone!
Dosages:
Magnesium (time-release)--dosage as recommended on the bottle
Vitamin B2 -- 400 mg per day
CoQ10 -- 400 mg per day
I became ill on the 400 mg of vit B2, so I lowered it to 100 mg and it is still working fine.
For magnesium, I use Mag-TabSR by Niche and I take it twice per day. It is a 12 hour time release formula.
The problem I had with the high dose of vitamin B2 was that it depleted me of all of my estrogen, so I was like a raging menopausal woman. The neurologist I see said that he has heard this before.
So, on these 3, for the last month, I have only had 2 episodes of pain and that was when severe thunderstorms were passing through and when the Florida hurricane was passing through.
The neurologist also has me avoiding:
caffeine citrus fruit and juice Chinese, Mexican, and Italian food
It is the tyramines in the Chinese, Mexican, and Italian food that can cause the headache. So, for example, the soy sauce, aged cheese, etc.
Many folks have to avoid other things like artificial sweeteners, MSG, sauerkraut, and anything else that is aged or fermented.
Hope this helps! I am so thrilled to be rid of this headache and hopefully have a life-long solution now.
I would get these 3-month or 6-month headache spells on occasion, but in the last year or 2, the spells were coming more often. Totally takes away energy and quality of life.
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You have to do what you feel is best for you. I hope you find relief soon. If you decide to try elevating your head while sleeping, you may find the following website helpful 
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