LMG

Hi All I am taking a low dose SSRI which helps a little. Finally worked up the courage to try florinef, and am taking 1/4 to 1/3 of a pill daily. Both help a little. I get migraines, and they are more severe with POTS. THe neuro suggested a beta blocker (or topomax or Pamelor) and felt that maybe the beta blocker would help with migraines and POTS. It seems like a lot to take, considering how sensitive we are. I have profound fatigue, tachychardia but do have a low resting heart rate. Anyone else on multiple therapies and doing ok? I also salt load, take potassium and drink lots of fluids. I feel pretty stuck right now...back in bed due to headaches so I have to try something. Thanks.

KIm- that's great! What do you think helped the most? Meds or supplements or time or what? Great to read about your improvement. We have a ping pong table in the garage and I miss playing. Sounds like I can hope to get back to that one day!!! How do you think the L Carnitine helps? Best wishes.

Aside from lowering heart rate, do beta blockers help with overall symptoms? One of my docs says it will, the other says it will cause extreme fatigue and lower HR too much.

Diamondcut- So glad the botox helped you!!! How long did it take to see results? Did it cut back on frequency? I am a bit scared but may give it a go....I could try the tricyclic or cal. channel first but not sure.Just don't want to make POTs worse. I don't take anything for the migraines as OtC doesn't help and the prescription stuff makes me sick. Sensitive to meds....like most everyone else on the board.

I have the head of my bed elevated still from several months ago. I wonder if lowering it would increase blood flow or make things worse? Anyone find that raising head makes headaches worse? Mine start at 6 am always. Angelloz- that sounds scary and something that could happen anyone. Botox seems scary to me. I have tried magnesium, shots of magnesium, acupuncture for a long time and not a dent in it. Maybe will try riboflavin or a drug I guess.

Firewatcher- do you take the klonopin in the day as well as night? I take a night dose but was told by my GP that a 1/4 dose in the day would be ok too. Did you notice the effects right away? I guess I never explored the gluten aspect. I figured since I am in my 50's i would have known about the gluten. Thanks for the input. Anyone try botox? I wonder if it could make the POTS worse. My GP says I will feel worse on the beta blocker. I have low aldosterone.

Well another two days of migraines. I finally have an appointment with neurologist for headaches. I would like to discuss the following treatments with him: Low dose beta, maybe Pamelor (tricyclic AD), botox. I am on low dose florinef and SSRI and klonopin, none of which have helped or worsened the migraines. Anyone find any relief with those or something? I am dealing with other POTS symptoms but losing three to four days a week due to the migraines. Can't use triptans as that (zomig) is what triggered the POTS for me last year. Thanks for any input.

Another migraine day for me today. UGH. I can't take triptans as that is what caused POTS for me last year. i finally got a referral from endo and PCP to a neurologist in town (can't get to headache clinic out of town, too sick to travel now). Diamondcut or anyone- how is the botox working out? Can it make POTS worse? That's my big fear. I have a list to discuss- beta blockers (but would have to be low dose), pamelor ( a tricyclic), botox and maybe the nerve block. Any input from anyone would be welcome. OTC stuff doesn't help, can't tolerate advil. The headaches are getting to me. Thanks, Lauren

I took it for a while and it seemed to help..over time less so. One thing I read was to drink it through a straw so the vinegar didn't hard the enamel on your teeth. I didn't bother with that though. And if you want to get the type Issie is referring to, with the mother in it, Braggs is carried at most health food stores. If you google apple cider vinegar, there are many people who swear by its benefits- for GI, headaches etc. Again, it was good for me for a period of time with no bad effects.

I would like to supplement with D. Have bought over the counter in oil based form and don't really like the way I feel. Any form anyone taking that helps? And how long to notice?

I started a 1/4 of a pill a couple of days ago. Nothing bad so far....I was very nervous so am relieved. Very glad you are doing well, S-POT. I send you a pm so we could exchange some info about florinef experience. The D is interesting too as I tested low. Was your aldosterone low? Lauren

Good luck S-Pot. I just got a call from my endocrinologist who said I also should start florinef tomorrow. My aldosterone was very low and he said the renin levels were undectectable. I felt miserable off the salt for the few days before so maybe that was a clue. However, I have horrid headaches much of the time and i already have low potassium so I am concerned. But will try it. I usually add about 4g of sodium above my regular diet. May have to increase that.

Thanks Issie. I felt so bad last night that my husband brought me a glass of gatorade with some salt. The chest pain and shortness of breath subsided and I fell asleep. I guess I really didn't think I felt that much better with increased salt but I have been consistently salt loading for several months and clearly it makes a difference. How long do we have to be off salt for a more accurate level to show up? I guess I messed up last night but will continue on today. I do wonder though...he is trying to determine if this is primary hypoaldosterone deficiency which still won't alter the course of treatment. I have to try the florinef either way. Being so drug sensitive I am not anxious to try it but I guess the salt is a good indicator. POTS certainly is a complex illness.

Thanks Katybug. Would symptoms appear after only a couple of days without salt loading?

I have tested with low levels of renin and aldosterone which seems to me to be typical of POTS. However, the endocrinologist told me to stop salt for five days and then have it rechecked. I stopped the 6g of salt yesterday but didn't reduce any salty foods and today I feel awful....as bad as a few weeks ago. It could be a bad day of course, but I am wondering if anyone else experienced this. And then does it indicate a need for florinef? I am also having frequent urination- wonder if that is connected. Thanks for any insight you all may have about this.

I have POTS and terrible migraines too. Am trying an SSRI in hopes of it reducing the migraines. Can't say if it has helped yet. I also have neck pain now and had whiplash this summer so I finally decided to pursue that and just had an xray and an MRI. Don't have results yet. I am considering botox or cortisone injection or trigger point injections or something. Now to find an MD who does all of that. Please keep us posted if the botox works. Or how it impacts the POTS....I guess that would be my only fear. Hope it works!

I take in about 5g of salt a day now and I think I feel a bit better by doing so. I drink two liters of water and about 16 ounces of gatorade a day. I just tested low in aldosterone and renin and the endocrinologist wants to start florinef but first he wants me to go on low sodium diet for a few days and then test. I think that salt can artificially lower the aldosterone and he wants to see if I am deficient without it. I am a bit nervous that I will feel awful but will give it a go.

Great you are feeling better!! Thank you for taking the time to let us know the good news. It does help! Have been thinking about increasing my (low dose) SSRI.

Informative post. I had not known about ingesting that much sodium- I take about 4g extra a day. Sounds like a lot though-10-20g, doesn't it? Am going to try drinking the cold water fast on my next trip out. I too always sip and have a bottle on hand. Thanks .

Looking for answers- did you take a low dose beta? MD is thinking 10 mg propanolol. But they say that may not be enough for the migraines. Ramakentesh- do you think anything you were taking helped get rid of the migraines and come out of relapse? Thanks everyone. I am at the point where I need to get past my anxiety over betas and florinef and try one or the other or both! Like so many of you, I am sensitive to meds. Some I do ok with, most are a disaster. Lauren

Katybug- What symptoms does the florinef help you with? One of my big problems is the severe migraines which seemed to trigger the POTS in Sept. My BP fluctuates but is not awfully low. Tachycardia and weakness are big issues. Glad to know it doesn't trigger migraines. Maybe I will try it. How long does it take to know if it helping? Thanks for the info! Lauren

This thread is great as I am also thinking about trying florinef. I too get migraines. My doc said it might help relieve them, as it will increase blood flow. Anyone find that? I am more concerned with an increase in headaches. KJmom- I too have low potassium and also am concerned as I don't do well on the supplements. How do you handle your daughter's potassium levels through diet and how do you moniter it? Lauren

Yogini, That is wonderful news. It seems recovery can take a long time and congratulations on your getting there. I am on Prozac and wonder if it works as well as Paxil. Have been on 10 mg for 6 weeks. See some changes but still weak, in bed a lot and still have migraines etc. How long did it take before you noticed that it was a big help?

Thanks Martiz, yes it hard to have been bedridden and then so great to be up and around for 10 yrs. Still kind of in shock about getting POTS and relapsing back to bed for months. Thankful- yes I think florinef could work but wonder if it will make me hypertensive and give me headaches too. BP is not low- used to be many yrs ago but now not and as a middle aged person, I don't want to start getting hypertensive. But I guess I could try a low low dose. The doc is very much against betas and I am sure why. Thanks and hope to hear from others.

My migraines are awful and I think they did get worse after an auto accident this summer. And then the meds for migraines seemed to trigger this awful episode. An endocrinologist ordered the MRI and when I asked about looking into neck etc, he said no. So not sure where to go from here. I can't function with the migraines. All the other POTS symptoms are so difficult and then a two day migraine each week is added misery. Anyone have any ideas? Wondering if this will improve over time. I was bedridden many years ago with CFS and got out of it and it is hard to be back in this place again. But in reading your stories, I am encouraged that many of you find treatments that help get you back to functioning.