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LMG

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Everything posted by LMG

  1. I am struggling with finding a trigger and a remedy as well. I have tried the herb feverfew and magnesium and no ill effects from either and thought they lessened the severity but not frequency. Now I am not so sure. Have read 400 mg b2 can help, as can 300 mg cq10. I was taking 100 a day and saw no benefit but never got up to 300. I have read that salt can be a trigger or too little can be a trigger...so can't figure that one one. I tried Pamelor which is similar to elavil but not as sedating according to my neuro. I really couldn't tolerate it. My neuro says that SSRIS or SSNI/s can often help as a migraine preventative and they are easier to tolerate (in her opinion) than the tricylics. Just some info..you probably know it all but I do know how frustrating it is. Migraines are my worst symptom these days.
  2. I had whiplash twice in the year preceding POTS. My neck hurts a lot and I now get awful Migraines. I think the neck has something to do with my situation.
  3. Good luck with your new treatment! I take licorice root also and think it helps bp more than the florinef. What brand and how much do you take? I take a kind of gooey form by allergy research but can't take as much as suggested, or I can't sleep.
  4. Kayjay, In late July I took an epsom salt bath two nights in a row. Never really take baths and the second night, I ended up in the ER. BP was low as always but it set off bradychardia all over again and fatigue and a bad flare. Had been taking oral mg for a year prior to that so I am sure it was overload and absorbed differently for me. Won't be doing that again. I could not believe it, but it was the only thing I had done differently in a few weeks.
  5. I have really bad migraines and can't take any meds for them so I researched and found info about O2 for cluster headaches and rarely for migraines. I asked my neuro for it and she agreed. So I have a tank and use it at flow of 5-6 liter per minute for 15 minutes when I have a migraine. Sometimes it helps a lot, other times not as much and once in a while it doesn't help. I haven't noticed any benefits for other symptoms. It is not a nasal thing, but a face mask. PM me with any questions you have. Can you tell me how you use it, and what it helps for you? And please, how do you use it for migraines? Thanks! Oh, and no side effects at all!!! That is the best part.
  6. I have used PB8. It can be purchased at most health food stores, GNC's and Whole foods. It has the run of the mill strains of beneficial bacteria which is good enough for me. I have tried "stronger" types and not felt well at all. I don't take it all the time and usually just take one for a few days and then stop as I get a little stomach stuff from them. And of course, with POTS, we can worse with supplements too so go low and slow as always.
  7. Thanks to all of you.I had no reaction to the radioactive injection and they said no one ever does react so I think for me it was a test worth taking to make sure cardiac function is normal. They said for those who could not get their heart rate up enough on treadmill due to inability to do any exercise, they can pharmacologically induce a higher heart rate. I asked about it and they said it was a vasodilator which I knew would be trouble. Two patients had the pharmacological induction and they both said it was quite weird and horrid for a few minutes and they were given caffeine (coffee) to counteract a headache. Not giving out medical advice but that certainly sounds like a recipe for disaster for POTS or dysautonomia patients.
  8. I am scheduled for tomorrow and I am nervous about what they are injecting more than anything else. I have been in a slump for two months and am nauseas and shaky as it is Would not want anything else to make me feel worse. One nurse said no one reacts to it, it is just radioactive. Another said it could be a problem. Anyone?
  9. I sent you a PM as I live very close by and have a few docs I can suggest. Would also like the name of your cardiologist.
  10. I am curious as a few of you mentioned benedryl for migraines. I take aspirin or tylenol which of course, doesn't always work. What does the benedryl do for your migraine? I once took it years ago for itching and it made me kind of hyper. My BP and HR are low - does it lower it or raise it for all of you? Just wondering how it would go with the POTS.
  11. Hi All, I have only had an echo and EKG over the past two years of POTS and just recently was in the ER with chest pains. The ER physician scheduled a new cardio appointment for me and a nuclear stress test. I would like the stress test but am worried about the radioactive stuff that is injected. Like most of us, I am so sensitive to everything. My dad had a heart attack in his 40's (but lived to be 85)and I have high cholesterol, so they think I have some risk factors. Any suggestions- regular stress test vs this one? Any other tests I should be thinking about? My POTS and NMH has been handled more by a neuro and endo, and I do think this is something I would like to have looked at further, to make sure there are no true cardiac issues. Thanks!
  12. I suffer from migraines and can't take a lot of medicines. In researching, I found that O2 helps cluster headaches and sometimes migraines. I got a prescription from my neuro and sometimes, 15 min of o2 at a flow of 5 or 6 will totally get rid of the headache. I think it is a vasoconstrictor. No side effects. I told my GP about it and they said that when someone comes in with a bad headache they give them a shot of toradol, or give them 02. Also, a round of prednisone can sometimes break a cycle of headaches. Didn't work for me at all but I have read about it. Read up on Magnesium- IV etc as that is sometime some MDs use to stop a headache, in lieu of narcotics, etc.
  13. There are other forms of b12. I used to take cyanocobalamin form in injections many years ago and it helped. It didn't when I resumed them for the fatigue of POTS. My NP suggested the compounded methylcobalamin and I think it helps some. I have done some reading and some MDs prefer hydroxycobalamin so maybe that form would be ok for you. I do have a friend with fibro who takes methyl b12 sublingually, in 5000 mcg pills, and she says it gives her some extra energy. Keep trying and hope you will figure out a way to get it back into your system since it helped you so much!
  14. Dr. Blitsteyn does phone consults. So maybe if you go to CC, you can send her results and get her opionion on treatments etc. Get both places on board!! Not sure if insurance covers the phone consults. I did one and self paid.
  15. I take B12 too and notice an increase in energy. I take the injections..in my stomach. where do you do yours? And is it cyanocobalamin or methylcobalamin? If they are pre filled, I am guessing it is a compounded one. Can you tell us more about the form, dose, mcg and where you inject? I just take one a week. Great it helps with no downside!!
  16. I was suffering, and still do, from frequent migraines which worsened with POTS onset. I can't tolerate the migraine meds and did some research. Found that O2 was used for cluster headaches as a prescription and less often, for migraines. I finally got a small tank with prescription and many times it does help take down the pain of the headache. Not always but enough that I would not be without it. It is very reasonable in cost, no side effects at all. I think you can rent a hyperbaric chamber but I would try it first in a medical setting. Spinner, does it help pull you out of a flare? I am in a big one now.
  17. S-Pot, I am going through the same thing. Had a flare Sat night and went to the ER. They debated admitting me and now I wish I would have pushed it as I came home and just feel awful. I have brady now too..going into the 40's later in the day or at night. And yes, it goes up now 40 or 50 points but that doesn't always get HR over 100 but I still feel awful. I also get the dry heaves and wretching. Had gone months without it and was up the whole night Tues night with it. I am wondering how long this flare will last...like you was doing a bit better. Hoping it passes for you fast. I am increasing fluids, and salt again but no big changes. The only thing that I did different was take an epsom salt bath before my flare....maybe too vasodilating? And now I can't regulate? Best wishes.
  18. Thanks Corina,I am on day three of this. Supposed to take a trip to see the in laws...my first trip since onset of POTS so hoping it passes soon. Do you get back to your baseline afterwards? It feels just like the first 4 or 5 months of my onset. Miserable. I googled bradychardia...no real treatments for it. Anyone have any management tips?
  19. As with many of you, I have a low resting heart rate. I feel much worse when it is in the lower 50's. The past few nights it has dropped to the 40's. Other than having taken an epsom salt bath (which has magnesium which can slow heart rate), which I won't do again, I haven't changed meds etc. I feel like I have relapsed and feel awful again. Anyone find a way to raise heart rate? I know I can help raise my low bp with salt, gatoraide and florinef when bp tanks but not sure what to do with this. Thanks
  20. Kim I found a tick embedded and engorged on my arm last year...clearly came from my dog as I was housebound then. My doctor wanted me to take 2 weeks of abx, but I sent the tick to Igenex lab in california and had it tested. It wasn't cheap but it all came back negative so I knew I could not blame any new symptoms on that tick. Hope your tick is negative as well.
  21. Issie, That was fascinating and ties in with many treatments friends of mine with MS, CFS, Fibro are doing. Most of them are on minocycline or zithromax and see improvement. One has said baby aspirin. Does Dr. Fry suggest that ever? Also, is there a link to the specific diet or is it general- just low fat, low sugar, etc? Thanks again!
  22. Interesting thread. I smoked 25 yrs ago and then a few yrs ago started a few here and there. Seemed like it triggered migraines sometimes though. Then I had sudden onset of POTS in 2011 and couldn't even contemplate a cigarette due to the nausea. But my migraines have worsened dramatically since onset of POTS and sometimes I wonder if nicotine would help.
  23. I also just read about intranasal lidocaine as a migraine rescue. On day two of one now and going to neurologist. Has anyone tried that?
  24. Does Mestinon affect heart rate- lower or raise it? And BP? Or do you just feel better/stronger on it?
  25. I have the three days ones like Bebe. And not much works for me either. I can't take any of the tryptans, like Maxalt,Imitrex etc. I feel as though I have tried every natural remedy known...here are some that have worked once or twice. None of them work after that: Hot bath for feet and ice pack on head at same time. It helps the constriction process. Apple cider vinegar and honey in water (worked twice) Big shot of caffeine in form of coke or pepsi (I normally avoid caffeine) A product called Migralex- aspirin with magnesium I get them every 10 days or so and so have to work on preventative meds. Tried gabapentin, pamelor etc. Too many side effects. Am now trying Feverfew and curcumin. Will try butterbur and just read a study on melatonin preventing migraines. Also have read low D can cause migraines, So I need to supplement. Finally, I asked my neuro for oxygen. It is in a canister, and you have it low flow for 15 minutes. No side effects for me. It worked a few times, not working now but if you get migraines every few months it might help. Google O2 therapy for cluster and migraines. Hope any of this helps you get through this one. Does the Ultram act as a preventative or do you just take it when you have a migraine?
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