goldicedance1

Oh, my goodness. Florineff! Ouch....landed me in the hospital with intractable migraines. I don't it was the Midodrine that gave you the headaches. I am on a whole regimen of drugs--Pristique, labetalol, Topamax (to prevent migraines) plus Midodrine when needed. Perhaps a lower dose of midodrine. Also have you tried increasing salt in your diet. What about support hose, or better yet compression hose? How about sleeping with a slanting up pillows? You can have POTS with high blood pressure that falls when you stand. That is how much started out. Good luck in finding a regimen that works for you.

I have been dealing with POTS for some 2 decades. I have just been diagnosed with Glaucoma--wide angle low tension. Some of the risk factors for this unusual type of glaucoma seem go along with POTS--orthostatic tachycardia; migraines; bloodpooling, etc. I was wondering if anyone here has been diagnosed with this type of glaucoma--particularly those who have had POTS for a number of years as the effects of hypotension can be cumulative. I might also suggest that you be vigilant in getting visual fields testing.

Worked like a miracle for me! During my worst flares it pulled me out of the pothole. The short acting works the best for me. I begain in 2001 when I began to go to WVUH under the care of Dr. Hoeldtke, one of the pioneers in the use of octreotide for POTS. I had to stop the long acting because it raised my bp too high. During one test after 3 months on octreotide, it enable me to stand for close to 60 minutes. Now, I only use octreotide when I feel crummy. During the inital few weeks on octreotide it gave me cramps and diahhrea--a small price to pay for enabling me to stand and to function normally. My insurance (BCBS FEP) does cover it under its special drug coverage. It is very expensive. You give the shots yourself. No big deal. The one big side effect it can have and did have with me was it caused gall bladder sludge which necessitabed me having my gall bladder removed. After I had made gall bladder removed, I stopped octreotide long acting and switched to eopogen. At that point we pointed to Florida and I switched to Mayo Clinic JAX. There, the oncology department would not give me epogen given the stroke risk. They said they rarely use drugs like epogen anymore even in chemotherapy patients (except those with metaastasis) given the increased stroke risk. They were highly supportive of me going back on octreotive where they felt very comfortable using it. The short-acting version is just that. It only lasts a short time. There is a generic verion of Sandostatin though it tends to be in short supply. Therefore my doctor has written the script for non-generic only so that I can get my supply quickly. I use the mail order program so the cost is not prohibitive. For me, it makes a huge difference when I can barely get out of bed. I urge people to try it if only on a trial basis. It beats being home-bound.

I tolerate Maxalt for break through migraines but use Topamax as a preventative. Migraines are quite common with POTS or maybe are part of the POTS.

Hi, CatLady, I have Asthma and COPD: I use Labetolol with good success. Instead of Cymbalta, I use Pristiq and Topama. I also have fibromyalgia in addition to POTS. For asthma, I use Symbicort and my rescue inhaler is xopenex. Xopenex does not accelerate HRs as fast as the usual rescue inhaler. My pulmonologist oked the use of a betablocker even with asthma. It was Dr. Grubb who switched me to Labetalol for the POTS. If you are concerned about the asthma part, you should really see a pulmonologist rather than rely on your internist as pulmonologists have loads of experience with people with high blood pressure on beta blockers. They may not have experience with people with POTS. Let us know how you are doing. Goldie

Just wanted to say that I was in a similar situation with Zoloft and weight gain. Though I thought my weight gain was also attributed by the Lyrica. My doctor switched me to Pristiq and Topamax. I did lose weight without adverse symptoms. I had to transition off the drugs. I had to transition from one drug to another so I could tell what effects I was having. You may want to check with your doctor about switching to Pristiq--a newer drug. Just a thought. Good luck!

Ut oh! Be sure to report your symptoms to y our EP specialist. I know from experience from whence I speak. I do know that hearts behave funny for a while after they are irritated. Nonetheless contact your EP specialist. First of all, did you sign a release for an ablation? Your EP specialist should have been very sure to do an ablation since it is a permanent thing. I remember before I had an AV node ablation they did an EP study first to see what would happen. Then I was given the option and decided to go ahead with it a month later. Hopefully your cardio was right about your problem. Hope you don't need a pacer. You look very very young. Too young to get a pacer. Back in 93, before POTS was a common word, I had a sinus node ablation that really damaged my sinus node. Needed a pacemaker. Then they discovered I had POTS. Still had POTS symptoms. The worse thing I got was then junctional tachycardia because of the POTS my heart still wanted to beat really fast but couldn't. So than got AV node ablation. Now totally dependent on pacer. The good news I think my POTs symptoms are better controlled because of these two ablations. If you look at the POTS newsletters or research there is a recent 2011 or later Japanese study that suggests that people with intractable POTS that haven't been helped by conventional means may benefit by Sinus and AV node ablations and total pacing. In the event that you need a pacer--I recommend you talk to your doctor about getting a BIOTRONIK. I can make adjustments for autonomic changes.

Try the Mayo Clinic in Jacksonville. Sorry you have to deal with this. Look at the list of doctors. Message me if you would like my personal recommendation.

Midodrine--I am alway cold when everyone else was hot and vice versa. Itchy crawly things in scalp etc. The downer feeling as Midodrine wears off. Most common side effects. Midodrine is very very short acting and that is the beauty of it. It does not stay in your system very long. I sure wish I could find the report of the clinical trial study which listed the effects that most people reported. Most people including myself thought the benefits outweighed those effects. When I worked, I used to tell my colleagues that if I scratched my head it was not because I had lice or bugs but because of the medication. I remember even telling the Commissioner of Social Security that. Sometimes you have to put up with the bad and the ugly to remain upright without your heart beating at 175!

Unfortunately, I think that is a really common problem. For us, that was the main reason we moved to a 1 story home. I couldn't manage to go up the 1-flight of steps without getting out of breath. Moreover I had to retire from work several years ago because my work involved travel to Europe where there were lots of steps and steep streets. I have asthma but that is not the cause of the problem. I have also had cardiac nuclear stress tests and my heart function is fine, thank G-d. It is just POTS. Which, I guess, is somewhat reassuring.

My doctor told me the same thing as Dr. Rowe. The incline helps trick your kidneys into conserving water so you don't pee out so much at night. You drink atlot during the day when you are upright. When you lay day at night, your kidneys release the fluids. That's why you frequently make many trips to the bathroom. Not a sign of partial di. The raise should be an incline. You can buy foam wedges. A split bed does not cost $5000. You can get 1/2 that is not adjustable and 1 that is. Moreover, my doctor did write a prescription for a hospitable bed. But since our beds were old anyway, we decided to go for the split adjustable bed. Go to a regular store. Not the ones you see advertised on TV. You can use one twin ben and one adjustable twin bed. Or two XL beds. Be sure the raise is gradual as in incline.. I don't think they mean sleeping upright. But, to tell you the truth, even with the adjustable bed, I found myself slipping down the bed by morning. So I would go with the $40 foam wedge. Or, if you want to and don't mind sleeping apart, see if you can get a prescription for a hospital bed rental and give that a try before you make an investment. Insurance won't cover an adjustable bed.

I only use it twice a day. Is there a generic for the LAR version. There is a generic for the regular octreotide. I switched back to the fast acting because of the rise in blood pressure. It would seem as if your insurance covered one, it would cover the other...if your doctor could make a good case. My doctor actually was able to get the insurance to cover the brand name since the mail order pharmacy was frequently out of the generic. Goldie

Midodrine is very very short acting. Perhaps you need to space it differently. When my POTS is really flaring, I would take it closer together. Why would you take it at night when you are sleeping? I don't understand that. When you start getting the crash is when you should start a new dose. Also maybe the dose you are taking is not high enough. I was taking 10 mg 4 times a day when upright, allowing at least 4 hours before lying down. Also maybe you need to add Midodrine in combine with other drugs.

I know I felt much better after my pacer. If he was talking about an ablation, that's a different story. A pacer can always be turned off. There are many adjustments. Sometimes it's a good idea to trust your doctor. I am so glad that your doctor was talking about the Biotronik. If he wasn't, then I, too, would be having some doubts. The Biotronik is being using in many cases of orthostatic hypotension with syncope. Sometimes it's a good idea to trust your doctor. It sounds like your doctor is an EP specialist. If he is comfortable with the Biotronik, that says alot. I used to have a St. Jude. While that was an advanced model, it did not have all the advanced features of a Biotronik. I am100% paced. The Biotronik for me should last about 8-9 years. For someone not 100% paced, the pacer might go for 15+ years. The pacer is very small--about the size of a quarter. Please know that all of us on the forum wish you best and willingly share our opinions, but your doctor knows you best!

No offense to you all....but your cardio is best able to answer your question about the exercise feature. I am so glad that your doctor was talking about the Biotronik. He knows what he is talking about. A temporary pacemaker;...they only use that in the hospital in an emergency situation when they cannot impant a pacer fast enough as in you might be having a heart attack an need one implanted bedside. Or you are having a procedure done in the ep suite an need a temporary pacemaker. Goodnuff-- I agree with the advice your doctor is providing. In the old days of pacers, they were fixed to mimic the rate of an old person shuffling down the street, perhaps using a cane. They did not accelerate. Later generations did begin to accelerate when it could detect changes in heart rate. The Biotronik is the Rolls Royce of pacers. It is the latest generation. It has specific advantages for people with autonomic problems and helps deal with syncope. I do not represent Biotronik. I have a Biotronik. Let me know Goodnuff how it goes. Dr. Grubb has published an article about specific settings for people with autonomic problems, like POTS. Your doctor probably has it or can get it from Dr. Grubb's office. I had a copy of it but I am not sure I can find it. It might have been in the Journal of Pacing.

My insurance did cover it. I prefer though the short acting. My blood pressure stayed too high on the LAR.

I have written about this numerous times. I have had POTS since 1994. I am pacer dependent. Some on this forum speak about older pacers and not the latest on the market; Goodnuff--Perhaps you should to ask your EP doctor about the Biotronik Evia Closed Loop Pacing System. It can make adjustments that no other pacers can make. It can make adjustments due to changes in the autonomic nervous system. Dr. Grubb has been implanting this type of pacer in patients with POTS, If your doctor is not familiar with the Biotronik, it may benefit you to find an EP specialist who is. This is my 5th pacer. I would never get a pacer that cannot be adjusted for changes in exercise levels. My pacer is actually set with a minimum pace of 80 due to bradycardia coupled with tachycadia. It also has a maximum HR of 130 (possible 120). I just got this pacemaker on Halloween at the Mayo Clinic. Dr. Grubb wanted me to get this pacer last year when I saw him but Dr. Kusumoto preferred for me to wait until my St. Jude wore down. given the risk of surgery, infection, blood clots, etc. The Biotronik is noted for its ability to help with sycope! As far as ablation/pacer/ablation/ pacer goes, I noticed in the POTS newsletter, that there was a research study that noted that in some cases this might be the best route for intractable POTS cases. Good luck with your discussions with your doctor. I can't strongly encourage you to find out about the Biotronik. I did initially have some difficulty getting it adjusted. It took two trips back to the EP clinic to get the settings right but now it is ok. I wouldn't settle for second best. Many doctors/hospitals prefer to use one pacer over another because they can get it cheaper or it is easier to adjust, etc. If you would like more information, you could google Biotronik and Evia Closed Loop and Dr. Grubb. The Biotronik Evia also has another feature. I have a device on my nightstand. Every night, without me knowing it, it monitors my pacer to be sure it is functioning properly. If it detects something, it sends a notice to the Mayo Clinic. Every week, it sends a report saying all was clear. If you are going to get a pacer, be sure it is the right one. A pacer is not the end of the world. Many doctors shy away the from the Biotronik pacer because of its sensitivity in terms of adjustment. There are doctors who are knowledgeable about this pacer, though. I know that Dr. K had to get in touchj with Dr. Grubb about the right settings. My settings were more of a challenge because of the ablations. Let me know how it goes.

I am surprised that Ventolin would not increase his HR and aggrravate his POTS symptoms. It is possible that Asthma drugs like Ventolin, (I;m not sure about symbicort since symbicort is not a fast relieving asthma inhaler) and Xopenex may slightly improve his brain fog in that his breathing has improved. When you are not getting enough air, you feel like a fish out of water. I don't think you should confuse POTs meds with meds for Asthma or COPD.

If a drug was helping your POTS symptoms but the drug gave you other side effects, how much would you be willing to tolerate if it enabled you to remain upright? Over the years since I have been on the forum, I have noticed that many seem willing to put up with many side effects but others not so. Just interested.,,,,,,

Maybe you also have fibromyalgia. If lyrica causes constipation, then can't you take something for that. I have POTS and fibromyalgia. There are many overlaps between the two and some of the meds used to treat the two are als osimilar. The combo that works best for me beisdes Labetalol and Mestinon tr are Pristiq and Topamax. I had been taking Zoloft and Lyrica for POTS but when I saw the Fibro specialist he said he got better results in patients using Pristiq and Topamax. Also, Lyrica caused excessive weight gain.

octreotide works well for me. side effects were of benefit--stopped chronic diahhrea. cramping goes away. If you have problem with constipation, I don't know about octreotide. Its alternative usage is to help stop intractable diahhrea -- oncologists sometimes refer to it as cement. Also, it is known to cause gall bladder sludge or stones. I had to have my gall bladder removed as a result. However, octreotide did give me the ability to stand and maintain my blood pressure. I use octreotide during bad spells.

switched from zoloft to pristiq---works well and helps with fibromyalgia

Here is the article I was trying to locate about the use of the Biotronik and the proper settings. Observations on Optimal Programming of Closed Loop Cardiac Pacemakers in Patients with Refractory Neurocardiogenic Syncope The Journal of Innovations in the cardiac rhythm management 2: 7. 1-4 july

Here is the article that I was trying to find. Discussion of the programming settings of the Biotronik Pacer: Observations on Optimal Programming of Closed Loop Cardiac Pacemakers in Patients with Refractory Neurocardiogenic Syncope The Journal of Innovations in the cardiac rhythm management 2: 7. 1-4 july I don't know how you can get a copy of this article. My EP physician provided me with a copy. It is extremely technical. All I know is he used it to tweak my settings and I feel much better. My tweaking was made much more difficult because of the fact that I am totally pacer dependent due to an AV node ablation.

I think some of you are basing your information on old pacemakers. The Biotronik closed loop system can adjust for changes in heart rate. It makes adustments due to changes in autonomic nervous system. I got one. You need to check with an EP specialist who is familiar with the Biotronik. Not all EP's are familiar with it nor, if they are, are skillful at the adjustments necessary for the person with POTS. Dr. Grubb has been having success with it for people with POTS. A high HR is not going to kill you. A sudden drop in blood pressure without a quik rise in hr may cause you to faint. Pick your poison. Getting a pacer is not the end of the world. It does not damage your heart. An ablation to slow down a heart rate does damage your heart! Take it from me. The pacer will only turn on if you need it. From what I understand, most who have a pacer do not get it because their heart stops! They may get it because they have a slow heart rate. I think that you should have a frank discussion with an EP cardiologist. BTW, Brye..what kind are you getting?