Hoosierfan

Happy to report that I am totally off the Klonopin and throught the w/d! Yeah! Lasted about 2 1/2 weeks for me. Of course, I'm now in my "witching week" -- the week before my period is due, and, in my typical fashion, my bp has tanked and I'm having near syncope episodes. This morning I woke up and my bp was 87 / 47. Ugh. This despite increase salt intake, increased fluid intake, and compression hose (15 - 20 mmHg). Timely enough, my first abdominal binder arrived today so I'm trying that. Since I still want to get off the Florinef, and plan to do so, I'm thinking of trialing Midodrine to use on an "as needed" basis. My bp, energy, and stability seem to be ok the other 3 weeks of the month, so I'm thinking Midodrine (with its quick in, quick out) way of functioning might just be the ticket. And, I would take it just the couple of days that I get symptomatic during the month. Has anyone used Midodrine this way? I have a call into my PCP to see if she would consider it. I've never tried it, and am usually super sensitive to meds so I'm think a micro dose just to get me functional on these days.

Does anyone see a specialist in dysautonomia in Pennsylvania or Maryland that might be taking new patients. I may end up with a referral from PCP to do a full work up if we can't get my issues under control / fully understood by the beginning of June. I live in Central PA, so I think the nearest autonomic lab would be at Cleveland Clinic. If anyone has other suggestions (a Dr. at Johns Hopkins, etc), please let me know! Thanks!!!!!

Haven't tried the "Bs" but I hear that some folks have trouble with B6 making them feel wired. Have some B12 sitting on my counter but I'm afraid to try it. I did try CoQ10 about 6 months ago, but like someone else previously posted, it can lower bp. That was my experience. I started having syncope again. However, I also had reduced a dose on my SSRI that month, which can be a trigger, so it was either the CoQ10 alone or the combo that gave me the drop. So, just a note to be careful with it. Kimbell, I just talked to my doc today about taking some magnesium for headaches and she said to hold off while my gastritis is healing because it can cause tummy issues -- so you found that it did irritate your tummy? What about your bp? I have had bad reactions to many of the traditional headache meds (Topomax, Mobic) and the NSAIDS gave me the gastritis, so I'm starting to run out of options (other than taking my head off!)

Can folks weigh on in why SNRIs (or SSRIs) help with Neurally Mediated Hypotension? If I take a look back over my history, it is the SNRI (Effexor) that has been the most effective for helping me feel "well" with the least side effects (like the Florinef migraine I've had for over a year....grrr). But, I'm wondering exactly WHY it helps -- I'm having trouble researching it but would like to get my docs as much info as possible....both my PCP and my Pdoc (who prescribes the Effexor) don't seem to know the "why" behind it works (and whether there is any way to determine the "right" dosage that will work). Can you have your norepinephrine levels and serotonin levels tested, and, if so, how do they do it and what to the levels tell you? Again, I seem to be the one educating my docs.... If I get off the florinef and I start having syncope again, we may up my dose of Effexor...but before we would do that I'd like to at least have some guideline (i.e. blood test that shows low levels) other than "let's hazard a guess and try this."

I'll echo everyone else's comments -- push but don't push too hard. When I push too hard and get presyncope (I don't faint), I also get really emotionally upset (this SHOULDN'T be happening, LOL!!), so I've learned to try and push through the "bad" feeling, but just enough to keep me active until I get to feeling better. That seems to be the best balance for me physically and emotionally. And, yes, "Rinse and Repeat!"

Thanks. Issie, yes, I looked for Terri Toner but HSN doesn't carry. I ordered a couple of these: http://medicointernational.com/store/cart.php?m=product_detail&p=99 and also a "Stage 1" above the knee girdle. Will see how they fit / work and will report back.

For those who have used abdominal compression (Rama, Issie and I think a few others), can you give me some recommendations for type and brand? My bp has taken a slight turn for the worse since I reduced my dose of Florinef (from .075 to .05) and I'm now *just* in the 100 range and starting to see some 90s (grrr). I did get symptomatic on Saturday while up and around with the kids. My doc assures me that my adrenals will recover and that my bp will go up again, but I'd like to reduce symptoms as much as I can in the meantime to make sure I am somewhat functional -- increasing my salt and fluid, but also thinking of adding an abdominal compression after seeing a lot of comments by folks that it is really helpful. Suggestions???

Ok, I may give it a try. Accupuncture has been hit or miss for me, and, like you guys, I see the benefits for a day or two and then not much. At $100 a treatment, it's a little pricey for a "maybe it will work." And yes, who doesn't want to get an hour massage regularly!!

Interesting article in our local paper this morning about the benefits of massage therapy; one being increased and better circulation. Wondering if anyone with OH or POTS has tried it regularly and seen some improvement from it. I would imagine along with regular exercise (whatever we can manage in our particular circumstances), it might help. Since I am in the process of tapering off of Florinef, I'd like to employ anything in the arsenal I can to get me feeling ok through the taper and better afterwards so I don't need the Florinef. In fact, I have an appointment with a integrative medicine doc in the next few weeks so I'm really excited about what he might suggest.

Will second all of the sentiments and will hope that in the spirit of Easter, everyone here experiences a sense of renewal with their health that just improves as this year goes on!

Rama, I've been able to come down another .025 dose (now at .05), and so far so good. My highest dose last year was .15. I had a couple of adrenaline rushes / bp dips the first few days I was on the lower dose, but it seems my adrenals have stabilized now after about a week. I'm giving it another month before my next step down. My bp has come down a few pts (from 110 to 105 and 100s), but still in ok range and not symptomatic. All that is to say is that if you use this stuff long term (which I read to be more than a month or two), you can taper off of it so long as no underlying adrenal disease and your adrenals will recover.

Rama, a question about licorice root -- did you / do you find that it has less side effects than Florinef? I'm curious because I'm getting off of Florinef b/c of the side effects, and want a back up just in case my bp tanks (which I don't expect, but I like a Plan B, and C, and D...). What have you found with respect to dosing? I ask because my PCP has no idea about licorice root except that it "acts like florinef", so if I need to I'd like to take a dose range to her. Thanks!!! Mandy, I heard today from a GP that he takes 3 (I think mg) of Melatonin to sleep, but check with your doc. He's also older, and I know the dosing is so different when it comes to the elderly.

Great news! What is the recommended level these days? My doc tested it about a month ago and said I was well within range, but didn't ask her for exactly the number. I'd be curious what docs are saying women 35+ should shoot for (I just hit the 35 mark!)

Oooh, Mandy, I'm sorry the Klonopin wasn't helping. If it was making you excitable as opposed to calming you down, then all your Lexapro jitteryness would ABSOLUTELY be exacerbated...no wonder you felt so horrible. Just go slow off the Klonopin b/c it can be a bit rough, and let your doc know what you experience. I'm curious about the Licorice root too since I am tapering off the Florinef....curious as to what doses people take and what brands they use in case I need a little something after I get off the Florinef. I think Rama has taken it pretty consistently so hopefully he'll reply.

I've used my Omron lying down when I get lightheaded, and I've gotten as low as 80/48, but I did get "E" a few moments before that. I'm curious about the wrist monitors because I have another one where the screen sits on the inside of the wrist and you have to hold your arm / wrist like you are "dancing like an egyptian!" and it consistently gives me different readings. I don't think it fits as well as my Omron. Never had a upper arm one

I have an Omron wrist monitor and use it for the "stats" I give my docs. Have always wondered whether there is a difference between the writs monitors and the upper arm cuff (accuracy, etc). What do you use and do you see any difference?

At least I'm off of work right now! Julie, can you explain to me what the parasympathetic and SNS do and how they relate to one another (so I can try and figure out if there is anything I can do to help the jitters)?

Mandy, I got it too with Effexor (and get it when I increase doses) and with Florinef....now I know what it was! Mine always calmed down after about a week. Know you are in the thick of it -- hang in there girl because SSRIs can be helpful. That being said, I now know that my doc always increased my doses too fast (i.e. she would throw me on .1 florinef from nothing), and that the unpleasant adrenaline surge was a clue....so check with your doc about your dosing and / or increase of doses. As someone once posted on this forum, there are a lot of us that do well on "pediatric" doses of medication -- so for example the dose of Effexor I do best on is 75 mg, but the typical dose is twice that (150 mg).

Thanks for all the thoughts and suggestions. Is it ok to sleep in compression hose? The last two weeks have just been so tough for me....have a bad case of gastritis that I can't shake and am off the Klonopin (day #12 and counting!!), but they both hit at the same time so I can't tell what is what -- do I feel so awful in the a.m. because my nervous system is a wreck (from adjusting to no K) or because my tummy has been so bad and so I have no energy....probably a combo of both.

Mandy, hang in there girl. I should put the disclaimer that I don't have POTS, just OH at times of stress, medication changes, pregnancy, etc. Normally, I am very functional and live a full, normal life (work 40+ hours a week, have two kids). Right now, I am in medication **** and so am on a leave of absence from work. When my OH issues flared up about 6 years ago (after mono), I started on a regime of Effexor and Florinef and was right as rain in about 3 months. And, I've had years of perfectly good health. My difficulty now is that I got in a medication mix up about 15 months ago that my docs are still trying to get me out of, but they will. When I had mono and with this battle, I have battled anxiety and depression. What has helped me is to start daily meditating, keeping a log of what has gone right that day, and when the "what ifs" creep in, I've learned to turn them around. Not "what if I don't get better"...."what if I DO get better?" Not "what if this medication DOESN'T work"...."what if this medication DOES work?". I am VERY impatient, so these techniques have helped me pass the time while I've been recovering.

Oh, and I should have said that it's really hard to get in the salt I need when my thermo-tabs seem to be bothering my tummy, and most salt-foods are on the "no no" for gastritis list.

Sorry, kids, just need to vent. My NSAID-induced gastritis has been going on 2 1/2 weeks and is still causing me to vomit daily, nausea all the time, and eating anything is a chore. I started prilosec 2 x day 10 days ago, helped a little but not much. Stopped the NSAIDs a week ago and saw some improvement, but I'm still yacking. For those with tummy issues, is this typical? I've read on-line that gastritis can take awhile to heal, but yeeesh, at this rate I'll be down to my high school weight in no time! I'm not doing much but laying around in bed because my tummy feels so yucky, I have no energy, oh, and my body is still adjusting to the Klonopin w/d. Have a call into the doc to see if there is anything else I can do besides the prilosec, the low-acid diet (I am SICK of bananas and potatoes!!!!), and the papaya smoothies (thanks, girls) that seem to help a little but are not kicking this thing.

Just curious if anyone else has more troubles with their symptoms in the a.m., and they seem to improve throughout the day. When I have hypotensive episodes, they tend to be in the morning, and also while I've been going through the Klonopin withdrawal I feel so much more jittery and "unstable" in the morning....tends to get better as the day goes on. My PCP has actually suggested that if I find myself with morning symptoms that I should wear my compression hose overnight. Wondering why symptoms are worse in the morning, and why they tend to get better as the day goes on. I do take my medications in the morning (Florinef and Effexor), but they are both systemic (i.e. they are still adequately in my system when I get up in the morning b/c of their long half-life), so that doesn't seem to explain it. Just wondering what others' have experienced and if there is anything you do in the morning to make them more smooth.

Mandy, hang in there. I think my week is slowly improving so let's hope yours is too. ((Hugs)). I agree with Corina, check with your doc about switching from evening to morning and how to do it. I know when I've switched timing of meds my doc backs me up 4 hrs each day until I'm where I want to be, but that's just her.

Mandy, I'll second everyone's comments. When I started Effexor it made me extremely pukey, so much so I ended up in the ER on Xmas day (boo) for bad stomach pains. But, those side effects eventually went away. I HAVE to take it in the morning, so that there is something in my tummy when I take it and all day long. Before Effexor I tried Zoloft and took it at night, and even with taking it with dinner, it sits in your tummy overnight with nothing else in there and low metabolism -- so major opportunities for tummy upset.