nmorgen

My new cardiologist told me today that I had insulin resistance, but my glucose levels were normal. I know that I get times when I am hypoglycemic. i was told to start exercising and it should improve. Does anyone else have this or have any experience that could help me?

I am so sorry to hear about everything you are going through. My heart and prayers go out to you. You could try Dr Gertler in Birmingham. He isn't an expert, but he got advice on helping to treat me. He is at UAB (205) 934-6600. He is an internist and cardiologist. Maybe he can help. Good luck.

I was told that I have hyper POTs. I have standing hypertension, narrowing pulse pressure and tremors resting and standing. The clonidine has helped with the pulse pressure and hypertension. The tremors, well I'm still working on that. My tremors are pretty random; sometimes in my legs, trunk or neck& face. I don't have any gait problems. I don't know about the cat levels, sorry. I know that Dr Grubbs recognises Hyper.

Congratulations! I hope your pregnancy goes well and you feel fabulous.

I sometimes get the spacey feeling. My eyes blur so that I'm not really looking at anything and I just sit there. I can't tell when it's going to hit me or what triggers it, but I just wanted you to know that I get something similar.

As far as my anxiety, I haven't really felt that lately, but fatigue is kicking my butt. I haven't been to the grocery store in 3 weeks. We went on vacation for the last 2 weekends and sometimes I felt like I just couldn't walk another step. I have never had this level of exhaustion. It really bothers me.

I'm glad your learning to adjust, hopefully your anxiety will come down as you get used to your new symptoms. Good luck.

Hi Reen,

I would be interested in any information you can provide. Thank you.

Hi Dianne,

Bravo to you for pushing through. I think I would enjoy working more than staying home. I have loved raising my kids and being there as they've grown, but now they are in school, I don't want to be home alone. I would rather be around other people, and hopefully I will find good people to work with and for. Thank you for the response.

I'm thinking about writing my Congressman, even though I don't take the drug. I think what they are doing is just wrong, and it doesn't make any sense.

I had the needle EMG. The test itself wasn't that bad, but it caused horrible muscle spasms for days.

I'm hypermobile, but I've never been diagnosed with EDS. I do have the hyper POTS. I guess I'm lucky that I don't seem to have any problem with GA or lidocaine. It's funny that even as small as the hyper POTs group is that we seem to be different. I remember corresponding with Dr Grubbs about 1 1/2 yrs ago and he said that they had found several different subtypes of hyper POTs. The paper was supposed to have been published last year, but I have never been able to find it. Has anyone else seen this paper or spoken to Dr Grubbs about their discovery on subtypes of hyper POTs?

I think stockpiling until there is a better option or you can get into the expanded access program(if it's even possible) would be a good idea. Call your doctors and let them know what is going on. My dr in the US wrote a prescription for clonidine that will last me for 2 yrs, b/c he wasn't sure if I could get it over here in Switzerland. I'm sure some of the dr will be willing to help. I would also get in contact with all of the generic makers. Maybe one of them will be willing to respond to the FDA. Maybe you should all contact the FDA and ask for details about this expanded access program. I thought it was strange that the article said to immediately stop taking the drug and then later said they would help people on a case by case basis. My heart goes out to all of you taking midodrine.

Given your age, I would probably try a couple courses and see how you do. I was so upset when I had to give up getting my MPH but I was also working at the time.

I'm hoping that the school wont be too bad. I am looking at taking a class or two to see how it goes.

One thing to keep in mind is that hospitals are huge - it easily can be a mile walk to your desk from parking even with handicapped accomodations.

I was thinking that I might try a doctors office. If we are still here I am looking at applying with WHO.

What is your undergrad degree in?

My BS degree is in Applied Math with a minor in BA and Chemistry

Issie is right. Not only that, but you are also given a time frame to appeal, and then it is totally your responsibility to pay. Call your doctor and see if they will appeal it before you just chose to ignore it.

Wow, I hope that doesn't happen. I know quite a few of you here are on midodrine and I'm sure it would cause you major problems if it were no longer available. I'll be praying the FDA doesn't just pull the drug, and the pharm co get those studies into them asap.

I just wanted some input from those who are currently working/going to school and those who can no longer work/go to school.

I have been a stay- at-home mom for about 5 yrs. My symptoms got bad about 3 1/2 yrs ago. Before that I was a manager at Fedex and it was a pretty physical job, but that was then and this unfortunately is now. I would really like to go back and get my MBA in healthcare admin. My thinking was that a job in healthcare admin would pretty much be a sit down office job. As my POTs doesn't seem to be getting any better, even with medication I am a little concerned. I don't want to spend the time and money for the education if I wont be able to work. I do realize everyone is different, but I'm hoping to find someone who has hyper and similar symptoms and whether they are able to cope with working or if it's too much. I would like to think that I could handle it, but sometimes that just isn't enough. I guess I want to know what kind of jobs those who are still working have, is it primarily a desk job or is it more physical. Are you having more problems while working or are you ok? For those who are not able to work, the same question. Did you have a desk job or was it more physically demanding? What kind of symptoms forced you to stop working/going to school?

Thank to all who answer.

I agree, ask for pure lidocaine, no steroids or anything else. The pure lidocaine should numb you enough for the procedure and I have never had any bad crashes from it. I'm also hyper.

I get the feeling like I can't really breathe when I am symptomatic. I'm not saying that you might not have thyroid issues, but it coud just be your POTs. I think you should probably try to get tested for food allergies. I have celiac and I have the same feeling of food not digesting whenever I am exposed to wheat. I take digestive enzymes when I start feeling this. As for the sleeping, I'm not sure which type of POTs you have, but I have hyper and I still can get horrible symptoms while sleeping. Tell your PCP, he/she is suppose to act like your manager and send you to specialists as needed.

I would definitely appeal it. You need to actualy look at your policy and see what they will cover. I'm not sure if it's from your employer or your spouses, but you can go to HR and ask for a copy of your policy. Some tests require preapproval before they are done. If this is the case you need to contact the physicians office that performed the test and ask about it being pre approved. Get any information you can from the drs office. They are usually happy to give you any help you need to get insurance to pay. Also, have them check and make sure that it was filed correctly. I had a dr's office file the wrong date and it was denied, but they refiled it properly and got paid.

You really should know what your policy covers and what it doesn't. Doing a search on the internet doesn't really help you, as most policies are completely different and usually based on what your employer has decided to carry.

I hope your able to get it straightened out. If your insurance does decide not to pay, try to make arrangements for a payment plan, or if you have the money ask if they will give you a discount for paying it off at one time. You can sometimes get up to 30% discount by doing this. I have to say that if it's not a private facility, but gets funding from the gov they usually wont offer you any discount, b/c they don't have to worry about getting their money.

Hi anna,

I hope someone can offer you advice on how to deal with the University. Just curious on how her friends help with the vasovagal maneuver. Maybe what I am thinking about is different then what you actually talking about, b/c what I know a vm doesn't really require any help. Anyway, I wish you and your daughter luck.

You know this is a good question. I'm married, but I was already getting dizzy and tachy as a teenager and young adult, not as bad as I am now, but still I had issues. I have also gotten mono or strep throat every year since I was a teenager. I didn't really discuss any of this with my husband until he talked about getting married. I told him then that I probably wasn't the healthiest person. At that point he didn't really care. Now that the POTs has gotten really bad I'm not so sure what he would think.

I asked my husband when he would want to know. Maybe some of the other married/dating ladies could do the same. Then you could the perspective from the man's point of view.

My DH's perspective:

He said he wouldn't mention it until the relationship was getting a little more serious ie. you were actually thinking about dating each other not just going out on dates. He also said definitely don't mention it on the first date. The first date is all about personalties and chemistry, don't bring negatives to the table from the beginning.

My MRIs and MRA were all normal. Sorry I can't be of more help. I hope you get a diagnosis and start to feel better.

momdi - I take clonidine when I start to get tachy. It helps to calm everything down for me. I have to say though that even after a tachy event I feel like complete crap for hours to days even with medication.

I can tell a difference between regular anxiety and my POTs. With the anxiety I don't feel like I'm going to pass out, whereas with the POTs I get really lightheaded and feel like I can barely get in bed before I pass out. Also, slow breathing seems to relieve the few anxiety attacks that I have had, it doesn't help at all with my POTs, in fact it usually makes me more dizzy and lightheaded. I also don't tend to realize my heart is racing with the POTs, I just know I'm about to lose consciousness and start to feel like I can't breathe. With the anxiety attacks I have noticeable heart beats, and I don't think I am as tachy as when my POTs flares up.

I think that the anxiety attacks are like a stroll in the park compared to a POTs attack. I wish I just had anxiety and not this horrible syndrome.

Yes, valsalva maneuver is part of the test. I got a little light headed while doing it. I do try deep breathing exercises, not everyday and I think it has gotten a lot better as I continue to do it. I'm still only able to do 18-20 breathes, but I'm hoping that will keep increasing with time. I have noticed that I sometimes "forget " how to breathe normally afterwards. I guess I concentrate so much on the deep beathing that it's hard to go back to normal breathing, really weird.

I think that my nausea(I also had constipation) was due to a motility issue. My GP prescribed me motilium/domperadone. It has helped and I feel a lot better. No more nausea or constipation. I'm now back to drinking as much Evian as I was before.

I'm allergic to fluoride, so I don't drink tap water either or use fluoride toothpaste.

We also have a rowing machine, so if the bike gets too easy I might try using it. I'm only starting with 10 min 3x a week. I also have to walk everywhere(grocery store, train station, etc..) so I don't want to over due it at first.

nowwhat!, I also have very labile blood pressure. My systolic doesn't get as high as yours but my diastolic goes nuts(115-75). When I'm watching college football my diastolic has jumped to 120.

Well, I just started taking Symbicort about 3 weeks ago, b/c my azmacort ran out and it is discontinued. I'm still quite sad about that as it really seemed to be the only thing that helped my asthma. I just looked up one of the side effects of symbicort and it is fatigue. Makes me wonder if this could be my problem.