New Here, Have Some Questions Re: Low Bp, Etc.

[kady05]

Forgive me for the long post, but I'm going to try to get everything out on the table to start with

Hi all, I'm 21yrs. old, and recently have been diagnosed with orthostatic hypotension. My BP has always run low (100/60-110/60), and up until recently, it never really affected me. I also have generalized anxiety, so for the longest time have geared all of my symptoms to 'oh, it's just my anxiety acting up'. I'm now realizing that these aren't ALL anxiety (although sometimes they do cause me to have anxiety once they start). I'm old enough now, and know myself well enough to know which things are anxiety related, and which aren't.

A few months ago, I started feeling dizzy upon standing. I geared it towards me being small (I'm 5'0", and about 95lbs., very petite), and maybe my blood sugar was low. I try to be very diligent about eating right, and eat small meals every 3-4hrs. I noticed that even though I KNEW I was eating right, I was still getting dizzy. It progressively got worse, and one day at the barn (I have horses), I stood up after sitting for about 45min., and everything went black for a few seconds. That is what made me make a Dr. appointment.

I've been seeing my Dr. since I was 5, so he knows me well. After telling him my symptoms, he scheduled me for a tilt table test. In the meantime, he told me to up my fluid intake with things like Gatorade, and stuff with sodium.

I had the tilt test done back in Nov. During the 'standing' portion, I was fine. From what I know, my BP stayed fairly normal (my average was 105/60 I believe, I can get the report if needed). When they laid me down after being upright for 30min., my BP dropped to 75/45. It took about 3min. for it to stabilize, and they gave me a bag of IVs during that time. I never really felt TOO dizzy, but I was laying down, so who knows how I would've felt had I been standing.

When I went and picked up the report for the test, I noticed that they didn't even put in there that my BP had dropped so low! I was really mad, because I had called my Dr. and he had said that everything was normal on the test. Then I told him how low it dropped, and he too was confused that they didn't include that in the summary. To me, that's NOT normal. My heart rate did stay 'normal' throughout the test, so NCS (I think that's what it is?) was ruled out.

So my Dr. basically said to keep up with my fluids, and if I was having a bad day, to try taking one Sudafed in the morning to see if that helped. I held off from taking the Sudafed, because I've never reacted well to cold meds. (I get jittery, rapid heart beat). I did take it a few weeks ago, and it made me feel like my heart was going to beat out of my chest, so I stopped that!

About a month ago, I got another symptom, getting out of breath doing simple activities, like going up a set of stairs, vacuuming, etc. I've actually had this issue for awhile now, but I had always based it on me being out of shape. I will say that even though I'm skinny, I'm probably not in the best shape anymore. I have ridden horses since I was 5, but in the past few months, I haven't ridden at all due to my dizziness, and getting short of breath. I feel like this symptom has definitely gotten worse in the past month. I'm also extremely heat intolerant, which started a couple summers ago. I never knew that this could be a symptom of low BP til I started reading about it.

So back to my Dr. I went, and he ordered and Echo & a Pulmonary Function Test. I passed both of those, although during the PFT I felt like I was going to pass out.

I went back on Dec. 29th to talk to him about the test, and while I was there, my BP went from 110/60, then 5min. later it was 85/60.

My Dr. has mentioned that we could try Florinef to see if that'd help me. He said it was a last resort, and that he really didn't want to put me on it. So right now I'm trying to decide what to do. Should I go see a Dr. that specializes in these 'issues'? Try the Florinef? Or what? I know most everyone here deals with this on a daily basis, so I basically wanted to see what others thought.

The dizziness, I can tolerate. It goes away after about 5secs., and I have never passed out. It's the shortness of breath, and generally being tired after short activities (like grocery shopping) that's the big issue.

So if anyone has suggestions, please let me know. I'm in SE VA if that helps. Hopefully I included everything needed in this post, but if you have questions, please ask. If you read this whole thing, thank you!

[corina]

hi kady, welcome at the forum!

to help you find answers, i think it is always best to consult a specialized doctor but it seems that the one you have seen, already knows about dysautonomia which really is a bonus! whether or not to start florinef is a difficult question. in my opinion you should see a specialized doctor to see what possibillities there might be for your situation and be informed about the pro?s and con?s of each med you are considering. if you can?t see a speciaqlized doctor it depends on how much this doc knows about dysautonomia and if you feel comfortable enough with that.

hope this helped a bit!

good luck,

corina

[mkoven]

Sounds like you should go see a doctor specialized in dysautonomia. Where are you located? Something else you could try are compression stockings and midodrine. The main downside with stockings is that they are hard to put one. And midodrine is very short-acting, so if it doesn't agree with you, it will leave your system fast. I'd try that before sudafed. Midodrine lowers my hr--unlike sudafed. I'm on florinef and started it after midodrine-- for me I think they work together.

[kady05]

Sounds like you should go see a doctor specialized in dysautonomia. Where are you located? Something else you could try are compression stockings and midodrine. The main downside with stockings is that they are hard to put one. And midodrine is very short-acting, so if it doesn't agree with you, it will leave your system fast. I'd try that before sudafed. Midodrine lowers my hr--unlike sudafed. I'm on florinef and started it after midodrine-- for me I think they work together.

I'm in Chesapeake, VA.

Is Midodrine something you can get OTC, or does it need to be prescribed?

[Dizzysillyak]

Here's the website I've been using to understand OI. The first treatment option listed is salt loading. They list foods that contain salt but I've found that salt water works best for me. I use Himalayan, celtic or Redmond's real salt. Our bodies require 2500 mg of sodium a day and if you're not getting that it can lead to other health issues. Low blood pressure is just one side affect of low sodium ... I'm holding off on taking any meds too since it seems like all I ever get out of them is what's listed as side effects.

http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm

BTW, I'd look at food intolerances and possible celiac disease / gluten sensitivity. John Hopkins states in this article that OI can come from food intolerances too ...

HTH .. Marcia

[Dizzysillyak]

This was a double post and I'd delete if I could find the delete option ...

BTW, it's not like I have my OI under control. I'm a newbie and I'm here to figure this out too. BUT the salt definitely helped ... my BP hasn't been constantly low since May 2008 when I first added the salt. It's still dropping after I've been up awhile though ...

? 4 Old timers .... Do you have a standard protocal like the one from Hopkins here ? And what do you think of steps 1 and 2 the JH protocal ? Did this work for anyone ? or are you still symptomatic ? Step 3 is drug intervention ... how is that working for you all ?

[kady05]

Here's the website I've been using to understand OI. The first treatment option listed is salt loading. They list foods that contain salt but I've found that salt water works best for me. I use Himalayan, celtic or Redmond's real salt. Our bodies require 2500 mg of sodium a day and if you're not getting that it can lead to other health issues. Low blood pressure is just one side affect of low sodium ... I'm holding off on taking any meds too since it seems like all I ever get out of them is what's listed as side effects.

http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm

BTW, I'd look at food intolerances and possible celiac disease / gluten sensitivity. John Hopkins states in this article that OI can come from food intolerances too ...

HTH .. Marcia

Thank you for that website, I'm reading it now. It's funny that they list birth control pills as a medication that can help symptoms. I actually went off of my birth control (I was on the NuvaRing) 2 months ago because I wanted to see if that could be causing the issues. I have actually said to my mom that I feel worse since I've been off of it. Interesting.

[mkoven]

midodrine is prescription. Many docs don't have experience with it. I find the brand name works better than the generic, but is expensive. It's on the "what helps" list.

[jump]

? 4 Old timers .... Do you have a standard protocal like the one from Hopkins here ? And what do you think of steps 1 and 2 the JH protocal ? Did this work for anyone ? or are you still symptomatic ? Step 3 is drug intervention ... how is that working for you all ?

I'm not really an old timer and I don't have things 100% under control, but I have definitely seen great improvements in my symptoms since March. For me, step 1 as outlined in the JH protocol - all the different lifestyle changes the describe - have helped me far more than anything else. I do also take a beta blocker and that helps too, but I think I could live without the beta blocker whereas I could not function without increasing salt and fluids, avoiding triggers, etc. I do find exercise helps me a lot although it's hard because it also exhausts me. I'm currently working on some dietary changes (trying to eat gluten-free) but it's difficult because I'm also a vegetarian (by choice, not by medical necessity) and I have a lot of food intolerances.... I've been reluctant to really commit myself to eating gluten-free because it feels like there's nothing left for me to eat sometimes!! But all the other things listed in step 1 are things I do religiously, and they've helped a lot.

[ajw4790]

Welcome!

Hope you are able to find some good drs. to help you out. You may want to try seeing a dysautonomia specialist. I guess your closest may be OH? See if your dr will write a referral and work to schedule an appointment. It can take 9-12 mnths sometimes to see a specialist. Even where you are located maybe try to see a electrophysiologist cardio. or neurologist that can help you more with the meds etc. Look for someone that deals with ANS disorders.

Hope you find some more help soon!

[shadesofgrey49]

On that link you posted, I noticed this: standing with one's legs crossed

I've always done this without knowing why. What exactly does it do? I find myself doing this lying down, too. Well, sitting too.

[kady05]

On that link you posted, I noticed this: standing with one's legs crossed

I've always done this without knowing why. What exactly does it do? I find myself doing this lying down, too. Well, sitting too.

Whenever I can, I sit indian style. I do it because my feet are always cold. I sit on my hands when possible too, because typically they're cold as well. Other than that, not sure what it does!

I'm going to try uping my sodium and fluids before trying anything else medication wise, so we'll see how that works.

[pat57]

Sudafed (decongestants) can effect the QT wave. Since you report (subjectively) heart rythem change, please tell your Dr. before taking any decongestant in the future.

Sorry that's all I can offer.

good luck........

[Dizzysillyak]

On the salt loading .. I figured out the hard way that I had to go slow on this. Granted, I'm 53 and much older than you ... My 21 year old DD drinks Red Bull like it was water ...

It made me hyper and gave me headaches when I took too much. I'll get fleeting muslce cramps in my legs if I have too much now ... they go away immediately but I usually take it as a warning sign ...

FWIW. I'd stick to the healthy salts too. Himalayan, celtic and Redmond's real salt ... The minerals in these are great for our bodies. Most HFS will carry these.

I experimented around with table salt but that just made me feel weird ...

Also, keep in mind that sodium and potassium have to be in balance in our bodies. If you eat plenty of foods that have potassium this won't be a problem.

Some recommend taking No Salt with your sodium but that just made me feel weird too ...

If you google foods potassium you'll get a list of which foods have this ...

good luck ... I hope you get the same benefits I did ...

[Eillyre]

Welcome, Kady! Glad you found us!

If you've read many of our posts, you've probably realized that OI, as with most dysautonomia, usually requires a fair bit of trial-and-error. So I guess the best advice I can give is to be patient with yourself and to be ready to venture forth boldy in your quest to find things that lessen/eliminate your symptoms. You probably will want to get in to see an OI/dysautonomia specialist whether or not you try Florinef, but as ajw posted, it can take several months to get an appointment, so the question becomes what to do in the meantime.

I was 20 when I started having my POTS/CFS problems, and actually started Florinef before seeing a dysautonomia specialist; the cardiologist I went to couldn't find anything wrong with my heart to explain why it would start racing, but did notice that my BP was dropping when I stood up, hence the Florinef (she was convinced that I was dehydrated until she found out just how much fluid I took in each day!). Florinef, along with increased salt consumption helped somewhat initially, but eventually we gave it up because it ceased to have any noticeable positive effect and gave me a killer headache. Some people on the forum find it a tremendous help, however. The only way to find out if it helps you is to try it.

I would find out from your doctor why he calls Florinef a last resort, though. Is there a medical/chemical reason why it would be likely to harm you? If so, you might want to skip Florinef and wait to see what other options a specialist suggests instead. If your doctor just prefers to exhaust other options before starting you on a medication, and if you feel that the non-medication options are not working well enough, you might want to consider trying Florinef for a little while under your doctor's supervision. If it helps even somewhat, you'll not only feel better but you'll also be able to tell the dysautonomia specialist what it's doing for you. If it doesn't help, the specialist can rule that medication out as a possible solution or perhaps gain some clues from the way that you reacted to it. One of the things that Dr. Low said he appreciated about my sizeable (!) portfolio of records was that by the time I went to see him, I had already had so much testing and standard treatment-trying clearly documented (e.g. Florinef, Midodrine, etc.) that he had a good idea of which direction we should probably go next.

Sorry not to be able to give you something more concrete! If you want to PM me with any questions or just to chat, please feel free to do so!

Welcome again to the forum!

Angela

[kady05]

I would find out from your doctor why he calls Florinef a last resort, though. Is there a medical/chemical reason why it would be likely to harm you? If so, you might want to skip Florinef and wait to see what other options a specialist suggests instead. If your doctor just prefers to exhaust other options before starting you on a medication, and if you feel that the non-medication options are not working well enough, you might want to consider trying Florinef for a little while under your doctor's supervision. If it helps even somewhat, you'll not only feel better but you'll also be able to tell the dysautonomia specialist what it's doing for you. If it doesn't help, the specialist can rule that medication out as a possible solution or perhaps gain some clues from the way that you reacted to it. One of the things that Dr. Low said he appreciated about my sizeable (!) portfolio of records was that by the time I went to see him, I had already had so much testing and standard treatment-trying clearly documented (e.g. Florinef, Midodrine, etc.) that he had a good idea of which direction we should probably go next.

I think he used the term 'last resort' because he said it can mess with your Potassium levels? I think that's what he said. Plus, he didn't want to jump right to meds. if it was something we could handle without them, which is what I'd prefer to do. I hate being on meds.

My symptoms have been great the past week, and I really haven't changed much in regards to more salt, fluids. I make sure I drink a lot of water, or Gatorade though, but haven't really increased in the past week. I did notice that my dizziness/shortness of breath was worse during the week before my period started. It happened to be my first period since going off of my birth control, so it was the 'real' thing. I think the birth control helped keep my hormones straight, which in turn may have helped my symptoms. So, I'm considering going back on it soon. The only reason I went off was because we wanted to rule that out as a cause of symptoms.

Thanks for all the advice!

[Megan]

I take Florinef, and also have to take a potassium supplement every day, as the florinef drained my levels. However, for me, it's worth it. Just a thought.

Meg