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Everything posted by jangle

  1. Fludrocortisone + volume loading (salt water)
  2. Well contrary to my thead title I've actually found fludrocortisone + volume loading to be quite effective in ameliorating symptoms. I'd like to up the dosage of fludrocortisone, but finding a doctor to do that is proving to be quite challenging. Exercise has its role, it takes time and a lot of commitment, and is heavily dependent on your current state of health. I would say when I was running 5-6 miles per day I was feeling about as good as I'm feeling on .1 mg/d of fludro. Maybe a little bit better. I really need to start exercising again.
  3. My experience was a lot like Leigh8's. I would suggest inquiring on getting your son lecture notes provided by the university as it can be difficult to pay attention during lectures. Also I would advise laying low on the alcohol even though there is tremendous temptation to abuse it during the party years. As for the dorm living, I'm not sure if I would have been able to handle that constant activity level especially if it was disrupting sleep. A good alternative would be to live off campus with room mates who're considerate to your son's needs. That way he's not isolated but he's not bothered
  4. It takes a while for the body's blood volume to adjust. I don't have any data for this but just my experience. It literally took 5 weeks on Florinef and salt + water loading before I felt a difference. For some people it takes even longer. IV saline works so well because it directly forces the body's blood volume up very quickly. Whereas the body has other compensatory mechanisms for dishing ingested low amounts of fluids elsewhere. Why this is I don't know. Just a theory.
  5. I corresponded with a Mayo Clinic doctor (who does a lot of research with dysautonomia conditions) via email about the lightheadedness associated with POTS and I got a reply that POTS patients usually maintain perfusion despite a tendency for some to have syncope. I don't really want to say the name as I'm not sure they'd want it published. Now I really wish this was an issue that would be rigorously studied. Yes there are studies (which I don't have the time to find) that measured cerebral blood flow in POTS patients supine and tilted and found that they had the same levels as control patient
  6. They help my heart rate, and do seem to make a slight impact on my symptoms, they do reduce my lightheadedness and anxiety symptoms. But really the difference between taking them and not taking them is not that great. It might just be placebo effect to be honest.
  7. Keep in mind though what your cardiologist said was extremely insensitive, you have to have the perspective they have. They see people with conditions that are literally killing them, though it's still no excuse to have empathy lacking.
  8. yay a study that says something is normal in us!
  9. Jangle you seem to know a lot about POTS. I was wondering what you think about blood volume and POTS. Do you most people with POTS, even the hyperadrenergic variant, have low blood volume? I'm wondering if I have it and if increasing volume could help me. Sadly there doesn't seem to be a way to test for this which is a pity. I guess I'll just have to ask my doctor if they think it'd be worth a shot. Btw when you say your blood pressure was prehypertensive what range is this exactly? Also was that before or now? Prehypertensive range is the top number being between 120-139 mmHg. Hyperadrenergi
  10. Well I'm still going through it, but here's my experience so far. I believe I'm in the hyperadrenergic subtype, but I've never been formally diagnosed. My blood pressure usually elevates upon standing and it's in the normal - prehypertensive range, but has been known to go hypertensive in conditions of stress. I started at .1 mg/d and that's the dose I'm on now. I load with about 2-3 glasses of salt water a day in addition to what I normally drink. In the first few weeks I noticed some mild improvement, but that just might have been me thinking it. Now well into my 5th week on this dose I'
  11. Seattle, the person you're referring to was TXPOTS - she began with volume expanders and then began an exercise regiment where she slowly increased her jogging distance and eventually added additional exercises such as weight lifting and the stair master. It took her 18 months of this regiment before she was finally un-diagnosed with POTS and described as symptom free. I spoke with her personally and she stated the last type of exercise she added before become symptom free was the stair master. Earlier this year I began an endurance exercise regiment for about 3 months and I was feeling notice
  12. When your son was on the Florinef did he increase his salt+water intake as well? Is he still maintaining the high salt + water?
  13. Thanks, unfortunately today I'm back to the same old lightheadedness. I'm probably going to need .2
  14. Think it's kicking in even more for me. I feel my lightheadedness dissipating considerably, it's like a feeling of slowly immersing oneself into a hot jacuzzi. I'm still somewhat lightheaded, but this is definitely helping me.
  15. I didn't make clear what I was comparing. In the instances of diabetes and other heinous side effects induced by steroids, this is generally attributed to happen through the glucocorticoid activity. I was comparing these two dosages. .2 mg Florinef has 1/12 the glucocorticoid activity as 5 mg prednisone which is already a low dose of prednisone.
  16. I've seen some reviews of fludrocortisone that seem to indicate that it's effects take hold predominately around 6-12 month period, so that might be what you're experiencing as well. Makes me wonder if I should just stake out at .1 mg and see how I do over time. I'm not really getting any side effects/edema at this level.
  17. My neurologist is rather conservative and is reluctant to increase the dosage of Florinef from .1 to .2 per day. She's afraid of the corticosteroid effects of Florinef, however I've calculated it and .2 mg of Florinef would be equivalent to 1/12 the corticosteroid activity of 5 mg prednisone - the lowest dosage of prednisone. Symptoms of diabetes etc from corticosteroids aren't typically seen until one gets to the higher dosages of prednisone, like >30 mg. But anyway, even on this .1 mg/d I've noticed that I'm getting more improvement as time goes on. It's now my 5th week on the medication
  18. I don't see how laser eye surgery could excarbate an autoimmune illness? Not saying its impossible I just don't see the link. I say go for it and happy holidays
  19. I would say to focus on the parts of your life that makes you happy, especially during the times you get where you feel normal. Additionally, it is absolutely essential that you get the correct medical support team, the therapist who makes you inhibited to share your struggles is the type of person you need to stray away from. I'm not familiar with autonomic crises, but I'm pretty sure if you're having one you need to be able to tell someone not just as a matter of support but as a matter of health. This extends to your medical team, which I hope you're able to get some very good quality resea
  20. Despite it being listed as a conservative treatment option, endurance aerobic exercise is a powerful tool to use in alleviating symptoms. If you are well enough you might want to consider trying to incorporate daily aerobic conditioning. I'm sorry to hear the IV fluids hasn't been as effective lately, I would still say that giving fludrocortisone another try might have some benefits. I know for me it has helped my lightheadedness at a rather low dose of .1 mg/d. I might try to go from here with exercise and see where that takes me. Going to vanderbilt is never a bad idea, they might be able to
  21. I've not tried IV saline but florinef is definitely helping me. Currently I'm on .1 mg/d. I'm going to try .2 mg/d as I haven't gotten edema or anything like that. IV Saline is pretty innocuous, it's just a hassle to put in and out all the time. There is some chance of pretty serious adverse effects, but with the bags they use nowadays and the techniques it should be safe. I kind of want to try it, but I'm going the florinef route as it would cost me quite a lot of money to go to the ER and then not know if they'll actually give it to me.
  22. Presumably at least some of the patients who fell under the term "Da Costa's Syndrome" had what we now call POTS. That was back in the civil war era, but in world war I, a few british physicians termed a syndrome known as "soldier's heart" whose symptoms closely mirror that of POTS too and perhaps even CFS patients.
  23. I'm not sure as I haven't really experienced a remission since I've gotten this. I find this oscillatory pattern in others most interesting and it does give me hope for an eventual recovery. I think any answer to your question is going to be highly individualistic. Has there been anything recent happen in terms of stress or other significant events that could have triggered this relapse? How has your sleep pattern been lately? Possibly eliminating any excess stress and/or correcting your sleep pattern could be all it takes. My guess would be to begin an aerobic exercise program, from what I've
  24. Yes - my blood pressure was pretty much normal before I started taking Losartan - around 120 or so. After Losartan it'd gone into the 110s. I also take Florinef which boosts my blood pressure. Other than the blood pressure drop (which was the original intent of losartan) I don't get any other side effects. As for the TNF blockers - I presume they're going to lead to more symptomatology
  25. I would say that one should ask their doctor about increasing the dosage of Florinef and ask about taking in salt water. IVs are not without risk in fact, they can be quite dangerous not to mention time consuming. Florinef will accomplish the same task but in a much more manageble way. I'm currently on .1 mg. I notice if I take in about 3 glasses of physiologic water (concentration of salt mixed with water) it relieves my lightheadedness for a little while (before I pee it out again). I'm going to be titrating this up to .2 mg
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