Jump to content

p8d

Members
  • Posts

    749
  • Joined

  • Last visited

Everything posted by p8d

  1. I tried five different beta blockers before I found one that works reasonably well. Don’t be afraid to ask for a different one, some work differently and help some of us but not others.
  2. Propranolol is a beta blocker and methyldopa is an alpha blocker. You only need clonidine OR methyldopa if you have hyper POTS. Methyldopa blocks the release of norepinephrine and lowers BP, I don’t think it has too much impact on HR. Many of us are on both a beta for HR and an alpha. Then of course you have to take stuff to increase BP because the other two lower it. My neurologist equates it to having the gas and brake on at the same time. It’s a delicate balance until it no longer works and you get to try again : /
  3. Methyldopa is an alpha agonist. It blocks norepinephrine surges.
  4. I’m trying to figure out what this feeling of my insides shaking/vibrating is. It’s always just below the rib cage and starts and lasts after I’ve been upright for 20 minutes or so. My BP and HR are very good for me, 130s/80s, HR mid 60s. It’s extremely disconcerting. I’m wondering if it’s a norepi surge. I know I have hyper POTS and take methyldopa but usually later in the morning so I don’t tank my BP. Any ideas so I can throw them out to my neurologist in a couple of weeks? Thanks.
  5. Cool water, slam a liter or so of fluid a half hour before, clench leg/bum muscles in shower, evening before bed vs morning, dry shampoo days you can’t shower.
  6. When I was going through peri menopause I got what I called rage attacks. Just over the top over reactions to small stimulus. My gyn put me on Effexor which really helped. Some docs recommend it for POTS too.
  7. ebonie, yes, I have heard of SPD. I only found one OT in my general area that deals with it but it’s a 45 minute commute across the busy metro area which would make me seriously ill. She also doesn’t take insurance so... I will give the weighted or compression vests a shot. I already wear compression stockings so why not more! Thanks for the tip. I love the image of someone with a 5kg bag of rice on their head! Whatever works!
  8. DizzyGirls, no, I haven’t experienced that but shortly after I was diagnosed I developed severe neuropathy in my diaphragm area after eating. I didn’t recognize it as pain when asked by my gastroenterologist. I said no, no pain but after I ate I would routinely say I felt like I had eaten razor blades. After getting down to 84#, being hospitalized, having an endoscopy and on being TPN for 6 weeks gabapentin was like a miracle. Of course the dose was too high which we didn’t figure out for a few months but I still take a lower dose. I also take bystolic at and remeron at bedtime and methyldopa for norepinephrine surges earlier in the day. My norepi surges daily in the afternoon. The remeron finally got me sleeping after 18 months of a few hours at best. Don’t know if this helps any though.
  9. I hadn’t thought about fatigue being a factor. Thanks, I’ll monitor that. I’m housebound because of everything but moving vehicles is really difficult. Fatigue is one of my worst problems. Chuck E Cheese is beyond my imagination!
  10. Awhile back I asked about the feeling of overstimulation/overwhelming when moving, either in vehicles or when the tv pans/zooms. I said I would provide the info I received. I asked both the POTS neurologists I see about what might cause this and if there is any treatment. My original question was is it ANS or CNS. One neuro said it was impossible to distinguish which and the other said this is usually from non-headache migraines. For the migraines I was given the choice of increasing my beta blocker or trying topiramate as preventatives. I’m trying the beta blocker because my HR also is a bit elevated. I’m having less trouble with the tv panning but I have had a couple of colds that have had me stuck in the house and now it’s been too cold to try a ride in a vehicle but I hope to try it this weekend. I’ll keep you posted. Has anyone tried either a beta blocker or topiramate for this or inadvertently found it helps?
  11. Behind my left ear. The two dysautonomia neurologist specialists I’ve seen have told me explicitly not to take any opioids so the most I can take is Fioricet and not more than three times a week and preferably not on consecutive days to avoid rebound headaches. One suggested increasing my beta blocker or trying topiramate as preventative. I’m trying the increased beta blocker which is helping somewhat. I also have a product called an IceKap which is a baseball type hat with pockets to put in ice packs. It works pretty well but I still need a dark quiet room for the bad ones.
  12. Mine got up to 160/100 fairly regularly and I ended up cutting back on florinef a little bit which helps. Have you been tested for hyperadregenic POTS? I believe that can make the BP rise in some situations. I finally found a beta blocker that helps my HR and BP that I can tolerate, Bystolic. I also switched to methyldopa from clonidine for norepinephrine surges and found it didn’t tank my BP as much.
  13. My neurologist tested and treats my hyper POTS so I don’t think you should discount that the one you see won’t help you. My neurologist and cardiologist both think mine is caused by an autoimmune disease. After 3 ANAs since developing POTS one finally came up positive. Inconclusive as for type but I was given the diagnosis Undifferentiated Connective Tissue Disease and that’s treated with hydroxychloroquine. That has helped tremendously with achy joints/muscles and a little bit with fatigue but not the tachycardia or BP problems. The cardiologist and neurologist are pushing for IVIG but insurance has other ideas. Don’t stop asking for an ANA. I have been tested for 30 years every couple of years and it was always negative so my symptoms were blown off but I knew something was wrong and I was correct.
  14. So over three years I slowly, slowly worked my way up to thirty minutes of aerobic exercise every other day. I caught a cold for the first time after developing full blown hyper POTS three weeks ago. Every time I have done abbreviated aerobics, 15-20 minutes workouts with two to three days off in between I get destroyed with fatigue the likes of which I haven’t had in a year or so. The sore throat and achy muscles also recurred for the first couple of weeks. Now I have caught another cold and I am terrified that I will lose even more ground. Has anyone else had this happen. I did get over the actual cold symptoms but it took most of the three weeks. Any advice/commiseration welcome!
  15. Interesting. I would love anything that helps with post exertional malaise. If you try it please post your results.
  16. I don't have lupus but undifferentiated convective tissue disease which I understand is when the ANA is positive but not specific enough to identify a particular condition. I too, have neck issues. Not too bad, just a bulging disc at C3-C4 or 5. Brain fog this morning.
  17. I'm sorry the TTT was so bad. I absolutely dread ever having to go off meds and repeat it myself. I was tested ~every 5 years for lupus for 30+ years and it wasn't until the third ANA in 18 months post POTS that a positive showed. I too didn't think I had achy joints. I hadn't put together that having to buy more comfortable shoes meant my joints hurt. When the rheumatologist pressed on the joints in my hands and feet I swore rather forcefully from the pain. Treating the autoimmune disease has helped a bit with the fatigue and more so with the joint pain but hasn't done much for the POTS symptoms that I recognize.
  18. I'm hyper too. I also exercise, both weights and aerobic. I'm quite severely impacted but after three years, countless med trials and a year of physical therapy (still going) I can manage walking for 45-60 minutes on a good day. I take Bystolic for tachycardia, methyldopa for norepi surges (works more smoothly for me than clonidine), wear compression stockings, elevated the head of the bed and loads of salt and water. I'm homebound and ride my stationery bike and use a rowing machine 3-4 times per week. I do strength and weight training other days as tolerated. I also had an autoimmune disease crop up since being diagnosed and treating that with Plaquenil has helped the most with the severe fatigue.
  19. Hi. I've searched the archives on this but have a few questions I didn't see answered there and am hoping those of you who have tried this can help. I took my first dose last Friday and it certainly gave me more energy but I took a whole pill which was very intense. I've taken half pills a couple of other days and I get a lot more energy for a few hours but then crash pretty hard by mid-afternoon. Does anyone take it more than once per day? It's disrupted my sleep a bit, I wake early and with a half pill I can get back to a fitful sleep for a few hours. Does this wear off? I'm not taking it everyday because I have read it loses effectiveness. Any help will be appreciated.
  20. I have SNF and Raynauds. What you describe sounds like my Raynauds. You should check with your Dr. Many of us have Raynauds. Have you been diagnosed with POTS yet?
  21. Gemini, I've never heard of ocular migraines. Interesting. I asked my neurologist about the overstimulation and if was ANS or CNS. My previous PCP thought it was CNS and prescribed scopolamine patches. My neurologist said it was impossible to determine if it's ANS or CNS and told me not to use the patches so I haven't. My new PCP is checking with the other dysautonomia neurologist in the area for his opinion but I haven't heard back yet. She suggested that I try the madafinil the neuro prescribed for fatigue and thought it might help with the overstimulation. I've taken three doses so far and will be posting some more questions in a new post. I have traveled when I took it and did ok but I didn't go far. I'll keep you posted.
  22. I take a half tablet daily of Florinef and drink ~4 liters of fluids daily. I drink herbal teas/Trioral rehydration salts and take 4-5 Vitassium salt/potassium caps a day plus eat lots of salt. I have found, and I think one of the expert Drs recommends, that if I "slam" 500-1000mls of fluids every few hours, depending on bp/hr my bp goes up quickly and stays up for a couple hours rather than if I sip liquids all day. My bp though is quite variable. Sometimes too high, sometimes to low.
  23. It's not really like dizziness, at least to me. I asked my PT today and she said sensory overload, highly sensitized to lights, noises, smells, visual patterns. So I'll try everything you all have suggested plus these. Thanks so much!
  24. I've had to get a new PCP and while she is quite dysautonomia conversant (yay!!) when I tried to explain the issue of being overwhelmed in moving vehicles or moving my head too fast or being in bright, busy environments she suggested I was anxious and might want to see a therapist. I don't know how to describe it in medical terminology. I insisted that I don't get anxious and that it's like everything moves too fast for my brain to process. I don't know how else to describe it. Any ideas? Thanks.
  25. I can't tolerate those either. I do better on Vitassium capsules and Trioral rehydration salts. I have Banana Bag sachets but haven't tried them yet. Good luck.
×
×
  • Create New...