LMG

Katie, I read every review re the amitryptlline and it seems that 25 is the sweet spot for many. I don't think more is better with us and meds. It also can be quite help for interstitial cystitis, which coexists in CFS a lot as well. I think I will play around with it for a while. Have you tried Topomax? Just picked up a prescription for that and that is my neurologists med of choice for migraine prevention. She says 25, 50 and then 75 mg of that over a three week period.

I too am on amitryptiline for migraine prevention. It also is not helping, but I think that I have not even come close to a dose that could help. Am at 5 mg now, and going to 10 soon. It did not help my sleep, as most said it would, but oddly, I am sure I feel better on it. More energy and able to do more. I don't feel more mental clarity though, and feel a little more sluggish brain wise even at the micro dose. I don't have MCAS but do have CFS and POTS. Will keep you posted.

Did you start at a very low dose? I think we are so dose sensitive with POTS etc. Hope you feel better soon.

I did the diet years and years ago. I remember stopping it after a few days because I thought I would starve to death. And it was hard work finding all the substitutions. So I gave it up, waited a bit and then planned better when I started it so I had foods that I could eat around. However, the alternative foods didn't always agree with me. In the end, I went to a modified version: a lot of proteins, salads, potatoes, corn, eggs, cottage cheese, lemon and olive oil and of course salt. I eventually added back ketchup and mustard in moderation and did eat mayo after a long while. I just got a prescription for nystatin. Hadn't taken it in years also but I remember I had to go low and slow. It is not easy and I do think the feeling awful is die off in your case. A good sign, but hard to handle. One day at a time...

Good luck and here's to a speedy recovery! Hugs.

I started Nortriptyline this week for migraine prevention. I am at a very low dose- 10 mg and can't even tolerate that and had to lower it to 5. Not sure I will adjust but feel dizzy and not too great. Haven't checked my bp but yes, it probably lowered it as it can cause both orthostatic intolerance and elevated heart rate. I have been told by many to try to stick it out and just keep the dose low until side effects pass as it has a good chance of helping migraines. I have a headache today so not too excited about it. Good luck. Keep us posted.

I had it bad for a while and read that apple cider vinegar and or baking soda can help. Sometimes it did and other times it didn't. Small bland meals, a diet of sort of white foods- potatoes, rice, applesauce, white bread didn't aggravate it.

I am on day five of a headache. I have cut out so many so called trigger foods but still get a three day one every two weeks. It is almost like a schedule....it comes , finally goes and then returns again. I have not cut out breads or grains so I am thinking this is my next attempt. Anyone feel they got any relief? Any suggestions or maybe ideas how long it will take until I know something? Thanks....wanting some relief!!!

CQ10 or ubiquinol can be found in any health food store and even walgreens has a good brand, Doctors Best. Some studies have shown that up to 300 mg of CQ 10 has helped reduce migraines for some. Same with B2 which is riboflavin, at doses up to 400 mg per day. The thought is that they increase mitochondrial function. I think you might mean Alpha Lipoic Acid- once in a while I see that referenced for use in migraines. If you just google all of those and migraine prevention, you will see the uses. All are easily found supplements. PM me if you want brands prices etc. I am about to try B2 again...didn't give it a long trial before, as well as adding back Magnesium and another supplement as I am on day five of a migraine.

I know. I thought I found the magic bullet for the headaches. After about one month, it never stopped the big ones but still helped some minor ones. Now, I am debating still using it, but probably will for another few months. PM me if you want more info or anything about it.

I get frequent migraines, and no meds worked. I read about O2 therapy for cluster headaches and a few people have used it for migraines. So I got a medical prescription. I used high flow with a mask, not a nasal calendula as that is too low flow (only goes up to 3 liters per minute, I think). It helped for the first few times and never stopped a headache after that. Have used it for a while- no side effects, no improvements either.

Thank you for posting your story. I am sure it resonates with many others as it did for me. Quick question: I am wondering about the Vit D? Many of us are low and many have had problems taking it. Have you found that it helped you and any specific symptoms?

I don't know about the minimum payment as 721. I have not heard that. However, if you applied and now get benefits, you may want to find out what date they determined you to be disabled. If you applied say in 2013, and the symptoms started a year earlier, and your doctor documented that, you may get retroactive benefits for the period of time you have been waitng.

I don't take that drug, but it has happened to me twice with other generics. I now take note of what generic I use and even if my pharmacy stops carrying it, I go to one that does. It means extra driving but is worth it in the long run. You didn't cause it, if that generic disagrees with you. I know many people who do really well on syntheroid (brand thyroid) and all do poorly on the generic.

Liz, Does the arginine work most of the time for you? I have been on magnesium and not sure if I have a reduction in severity and frequency. I do have low bp already as well as low HR. As for the arginine- have heard of many supplements (feverfew, COQ10 etc) but never that one for migraines. So it is a rescue med, not a preventative? Any feedback is appreciated.Thanks

I don't think I saw any improvement. Had it raised for at least a year. My symptoms, like many others, are so unpredictable that it is always hard to tell what works and what doesn't. It never really made sense to me either- why would raising the head increase BP or help with blood flow. I am prone to migraines and it certainly didn't help prevent them. Curious what others have to say about this too.

I take b12 shots as well. Methylcobalamin and compounded specially. regular b12 shots not as effective. I see the same effects as described above. Less fatigue, and more stability. Some people say they get the same benefits from the sublingual b12, which are easily available. Google Dr. Lapp for CFS. He says 80% of his patients get some benefit from B12 shots

B12 shots help me and some have posted that highish doses of COq10 has done a lot for them. Low to no sugar is good for me as well. Sticking with a routine...same bedtime is good for me too.

Chocolate does not affect my BP or POTS but it can trigger a migraine for me, as many foods can. However, I have found if I want something sweet, it is better to have it later in the day. First, you have a baseline for how your day is going (even though we all know that can change quickly), and also I feel if I had a lot of protein for Bkfast and lunch, I can handle the sugar, but after a meal. Can't make it a meal. So I think many of us would feel kind of crummy after a boston creme donut first thing in the am. Maybe try oatmeal or eggs or protein and something salty like bacon (without nitrates if you can get it)? Try the other things when you feel ok, and have eaten and try choc in a more pure form, like a few bits of just a plain candy bar. Sometimes, choc is the only thing that makes me feel better or gets rid of a headache!!!

I used to do this when leaving the house and it helped me do a few errands. I had forgotten about it too and will start again tomorrow! Thanks. All about Peace- how is the binder helping you? Hope a lot...can you tell us what it does? I tried one two years ago and didn't like it, but maybe it was brand or that I was so ill then. Cheers to all!

My levels are quite low too. They were around 18 a while back and I finally got the level up to 25 this summer. I don't feel so well on supplements either, but my nurse practitioner said to try tanning salon as she said several of her patients felt better with pain etc. I was reluctant to try it but did so and did not feel worse from the tanning. Stopped for a while and am going to start again now that it is almost winter. I can't tell if I felt better in the spring when I did it but it is worth a try. I go in for 8 minutes,, twice a week. There have been some posts on this in the past.

I did it years ago and it helped with other symptoms like fatigue. millyaulit: how has it helped you? I wonder if it is because it is grain free so mostly gluten free. And non a bunch of processed foods.

Sorry for the typo: Myalgic Encephalomyelitus is the correct spelling.

Have you had a diagnosis of Myalgic Encepholmytus (ME) ruled out? It was formerly called CFIDS (chronic fatigue and immune dysfunction syndrome) but that name really trivializes an illness that can be as severe as your son's. Many cases are not severe, as with POTS, but some patients suffer the gamut of symptoms which include: Cognitive impairment, fatigue, sleep disturbance, orthostatic intolerance, neurologic disturbances etc. There are several MD's in the country who treat this with IVIG, Ampligen and other medicines. Many MD's dismiss it as with POTS but there are reputable immunologists and researchers who have treatment protocols. Try googling: http://www.cfids-cab/org/MESA/ccpccd/pdf I don't know how to make it a link but hopefully that will take you there. Hoping for relief for him. PM if you have any further questions.

Kelly and anyone else re benedryl. does it affect your heart rate? Slower or raise it? I took it years ago, before POTS, and it made me sort of hyper but I guess I could try it again. Also, amitryptilane has histamine blocking properties, doesn't it? Compared to the SSRI's I think. I need something for when the most severe ones come on and will try the dye free as nothing other than tylenol or aspirin are tolerable for me. Do you take the benadryl throughout the headache or just one dose? Benedryl is an H1 blocker right? Would zantac or that class of meds help with a migraine (they are H2's) Sorry, this seems like random rambling, but I am trying to figure it out as all of you above and we all have some many med sensitivities and can't take the triptans like most folks.