nunntrio

I love that song and she did a great job singing it. I had been following some of your earlier posts and am so glad your daughter is doing better.

Hi all, I have not posted much lately but now that my kids are back in school I have a little more time to check in Anyway, I started Dr. Levines program and had something very strange happen. As most of you know the program involves keeping your heart rate in a targeted zone. Well today while working out I noticed that I would have my HR in the zone then suddenly it would drop instantly 30-70 bpm. Then 20 seconds later I would be back in my normal zone. For example I went from 138 down to 67 then back up into the 130's all in a matter of 60 seconds or less. This happened at least 4 time during a 1/2 hour workout. I have used this monitor previously with no issue but will test it on my husband to make sure it is not the monitor or user error. Any thoughts? Is this just normal POTS variation or is there possibly something else going on. I have really just started to I have no real previous workout to compare.

Glad you found a Dr. willing to dig a little deeper. I knw how hard that can be. Keep us posted.

Just thought I would update everyone. I tried the DDAVP for a good three weeks and felt no difference. I did not have a bad reaction but it did not help. Back to the drawing board for me.

WebMD version with comments by Dr. Grubb[/url I really wonder how the Dallas group gets so much more press than the other centers.

Good point!!

This is a quote from the article. "The condition is so named (Grinch) because those who suffer from it have a heart that's too small." This I believe is a huge stretch and greatly over simplifies POTS. This makes it sound like that is the only cause of POTS. From what I know, there are very few with POTS that have ever been given this diagnosis. Just had to add my own rant about this.

"I was prescribed .2mg to take at night only. I am guessing since I am only taking it at night I should be able to drink and exercise normally during the day. Do you know when the max. fluid retention time with this drug?"

Since you probably won't be drinking at night, it should be OK. Every person is different with drug metabolism, so it may clear faster or slower in your system. It takes me 7 hours to clear .1mg. You will know (very clearly!) when it has worn off because you'll get thirsty and then pee buckets if you've drunk a lot. If you've limited your intake, it won't be too bad, but sometimes it can be urgent and copious! I can usually tell it is coming because I'll get thirsty before my bladder fills enough to need to find a bathroom.

Be aware, though, you can make a LOT of urine in a short amount of time!

Interesting...I can't wait. I guess I will stay pretty close to home the first few days.

I take .1mg 2x day. My "dump" is between 3 and 10pm and can be a pain, depending on how much I've drunk. I'm severely plasma deficient, so it was a huge help for me. I had my sodium levels checked several times in the first two weeks, but only had problems when I was on a constant dose, with no "dump." As long as you allow a time to shed the excess water, it is no big deal.

One strange issue to be aware of is exercise induced hyponatremia. I found out much later that I was inducing this by exercising while on dDAVP in the middle of its action. I was exercising at my maximum fluid retention time and technically hyponatremic due to the dDAVP, so I was having bad post exercise effects. I had to double my sodium intake to even this out.

I was prescribed .2mg to take at night only. I am guessing since I am only taking it at night I should be able to drink and exercise normally during the day. Do you know when the max. fluid retention time with this drug? Thank you for all your info. I am so greatful for this forum. I feel more at ease about taking it now.

This is extremely important to remember and your doctor should be testing your sodium levels while on this medication at regular intervals.

I am having my sodium levels tested in two weeks after starting. I guess I will give it a shot and see how it goes.

Firewatcher - Thanks so much for the reply!! I appreciate the tip about not drinking to much afterwards. What dose do you take?

OK now I am a little scared. I am not even sure what ADH is. From what I read, this is a drug for Diabetes Insipidus. I have never been tested for this and do not have any of the symptoms. I do not have excessive thirst. I thought I was being perscribed this to help with vasoconstriction and help with my low blood pressure. I am so fearful of new medications and am going on vacation in 1 week. I do not want to have a bad reaction with I am out of town. I might call the Dr. and get some more clarification on why he is recommending this. Is this a short acting drug? If I have a bad reaction will it short lived? Thanks for the input.

I am always very scared to try a new medication. I tend to react badly to all of them. How helpful has this drug to others? I am just really nervous.

By far my major symptom is what I call brain fog. I am convinced that the majority of my symptoms are due to lack of blood flow to my head. I just had a transcranial doppler in conjunction with a tilt test which showed I have a drop in cranial blood pressure upon tilt. My Dr. said that a normal healthy person should never show a drop in blood pressure to the head.

I did have a SPECT scan about 5 years ago in connection with something else my Dr.'s thought I had going on(A very long story). I now know what was going on was POTS. Anyway, it showed a mild pattern of global hypoperfusion. The SPECT scan is done laying down so I am not sure how accurate it will be for us potsies. I now no this is what is causing my symptoms but still have not found anything to help it.

For the full length, medium level of compression, I paid a little over a hundered at a medical supply store. That is about what they run on line as well.

What was your blood pressure like during testing?

I am not sure. I did not see the test result, I just talked to the Dr. on the phone. Traditionally my BP runs very low and does drop upon tilt, but it normally does not drop enough to disqualify for a POTS diagnosis.

I suspect that my symptoms are from lack of brain perfusion as well. What drugs does he want to try? I just made an appt with my EP and it is three months away. I am having more trouble with lightheadedness and want to find out why this is getting worse. I am fascinated by this test you had; wish they did that one at Cleveland Clinic.

I was very excited to get this test as well. As I said earlier, it was a major deciding factor in which Dr. I went to. I was lucky that he was at least within a helf days drive for me. Anyway, he wants to try Midrodine in the non generic form and a migraine medication call Gafergot (I know I spelled that one wrong). I have tried Midrodine before but used generic. I had a bad reaction but Dr. said for that particular drug it is important to use the brand version.

Ahh yes, that makes sense. Did he give suggestions on how to deal with the low blood flow to the brain? Or is that a question for the next specialist? I wonder if a vascular surgeon would have any insight re: PCS.

[/quote}

Yes, one of the things he wants me to do is see another interventional radiologist/vascular surgeon. I actually treated my PCS 4 years ago with vein embolizations. I saw a vascular surgeon in Jan. who did a venogram and felt that my remaining vein problems were not bad enough to cause the degree of tachacardia I have. He thought they were just a contributing factor. However, based on my receint test results, my POTS Dr. seems to think that they are more of an issue. He wants me to see a interventional radiologist who has delt with several of his POTS patients in the past. He also mentioned that multiple embolizations are not always a good idea but he wants me to get another expert opinion.

As far as other treatments he wants me to exercise to help increase venus tone. I am scheduled to see his exercise physiologist. There are two drugs he wants to try me that he he said help with vasoconstriction. The Dr. wants to try these drugs in a hospital setting because I have had such bad reactions in the past. I am not looking forward to that but if there is a chance it will work I guess it is worth it. I guess the theroy is if there is less venus pooling then more blood will make it to my head Thanks for your posts

Interesting! Was the transcranial doppler done while standing? This is the test I want done more than anything and have no idea where to get it done. I think this is the key to a lot of my head symptoms. I'm sorry I don't have knowledge about VO2 or PCS. Is PCS pelvic congestive syndrome (looked it up)? Not sure how it would cause POTS? What type of Dr. did all this testing - sounds like you got a very thorough work up. I want to go!

The transcranial doppler was done during a tilt table test. My worst symptom is horrible brain fog and I am convinced lack of blood flow to the brain is the cause. I did all this with Dr. Suleman in Dallas, he is an electrocardiologist(I probably spelled that wrong). I knew he did the transcrainal doppler which is one of the reason I choose him. I think Vanderbilt does it as well but I can not be sure. Yes PCS is pelvic congestion syndrome, sorry I should have typed it out. Basically, I have veins that have gone bad in my pelvic and stomach that are causing blood to pool. I have struggled with this for years but was told that it was not a cause for POTS. Dr. Suleman seems to think, because of my test results, that it is contributing. I will to reseach the Vo2 (volumn of o2 output)and will ask the Dr. for more info. next time I see him.

I got a call from my Dr. today with test results. I went through 2 days of testing and actually got some interesting results.

My tilt was consistant with POTS (I already knew this) but he did a trandscranial doppler with tilt which showed decreased blood pressure to my head. The Dr. said in a normal healthy person they should have no change in cranial blood pressure. I am almost certian this is where the worst of my symptoms are coming from.

I also had a very narrow pulse pressure with tilt. I already knew this but I never had a Dr. talk to me about it. I just figured that out myself from reading this forum and reviewing my TTT. It was nice to have a Dr. confirm it. I also had a VO2 test which showed I am only fuctioning at 50% the expected range. Does anyone know how this relates to POTS? I know this is a test of how you are metabolising O2 but I do not know anything else. If anyone has more detail about this I would love to know more.

My Dr. thinks my PCS is probably what is causing my POTS. He is sending me to another Dr. to discuss my options. Since I have already had an embolization done he said he is not sure doing more would be helpful.

It was nice to get some results that were not "normal", I just had to share:) I sure hope this leads to a treatment plan that offers some symptom relief.

Yea, and all the echos I've ever had were lying down. It would be interesting if they'd do them on an upward tilt...

I had the same thought and asked Dr. Suleman about that exact issue because my echo was done lying as well down. He said it would not matter but I do not understand how it could not matter. I will ask him to clarify that when I see him in a few weeks. I know when I had my MRI done of my pelvic area the internal rediloigist said it was not the best test because it was lying down however it was the easiest first step. Luckily my varicose/reflux veins showed up even lying down.

My vein Dr. said it could cause 30-40% of your blood to pool. However, if I understood him correctly my echo did not show insufficent blood return to the heart. Not sure if this could be causeing my symptoms if my echo show correct blood return. That is why I am having a POTS Dr. look at all of this for me.

Please keep us updated wether this procedure helped with POTS. I have been treated for PCS and have coils in my left ovary. However they did not get all my bad veins when they initailly treated me. I am debating wether or not to have these veins treated/coiled. My vein Dr. believes that could be contributing to my POTS but he did not feel they were bad enough to be sole factor. My vein Dr. said he would be willing to embolize my veins but he is not sure of the outcome in respect to POTS. I actually went to Dr. Suleman last week to get his opinion. He did a bunch of tests and I will go back up in a few weeks for a follow up. Anyway thanks for sharing your story and please keep up posted.

Can anyone explain what this indicates, though? Are goosebumps a general indication of vasoconstriction...the body attempting to push blood back to the core in that particular region?

I do not know but it is interesting and worth looking into. When I get these episodes is get very cold even though the room temp. does not change. This would support the your theory. If you find anything out about this let us know.

Wow, I have had odd goosebumbs as well. It happens to me almost every evening. I will get goose bumps in "patches" or just on one side of my body. Last night for some reason I was getting goose bumps up and down my right leg only. I have been wondering for a long time what causes this. Compared to my other symptoms it has never bothered me enough to complain about it but I wonder if it is a clue to what is causeing my pots. Will look into it futher since it seems I am not the only one experiencing this. Thanks for bringing this up.

Do you get the flushing that is uaually associated with Masto. My Dr.'s ruled this out immediately because I do not get flushing.

Tell me if any of this makes sense. I am freakishly sensitive to medications. I tried Midodrine several years ago, but it made me feel weird so I stopped. Well I decided to give it another chance. I was prescribed 2.5 mg., which I then cut in half. I took it Thursday night while kids were in bed just in case I had a reaction. The next morning I could barely get out bed - felt so TIRED, GROGGY, HUNGOVER type of feeling, my brain felt really ODD, just so out there and weak all day. The feeling started wearing off sometime in the afternoon. I didn't want to jump to conclusions and decide it was the Midodrine, so I tried taking it again Friday night -- Saturday morning - same feeling - it took all I had to get off the couch. I missed my son's soccer game. I also broke out in a rash all over my stomach on Thursday, but it may have been from the compression hose I had tried on - they were waist high and the rash was on my stomach and ribcage area ...sooo??? I dunno. Is it possible the Midodrine caused me to feel this way? What is my problem??? I can't seem to take anything.

I can not take anything either. I had the exact same reaction to midrodine. I felt completely doped when I took it. I basically had to sleep it off (in the middle of the day). I have the same reaction to beta blockers. I really wish I know why I could not take any of the recomended med.'s for this. It is very frustrating. So, I am in the same boat as you.