wareagle

I used to get B-12 shots to keep my levels up. I now use the sub-lingual liquid vitamins & they work just as well. Have you tried these yet? Much easier than shots!

Hi Tuesday, I would caution you to speak with a doctor or pharmacist regarding your concerns vs. Going by what the internet says. On this particular site is simply said that Florinef can decrease the effectiveness of Claritin and Claritin may increase the effectiveness of Florinef. I'm not sure why it says "SIGNIFICANT"...but it is not dangerous. Again, I've been taking this combo for years without trouble or concern from my doctors (I actually get to see a dysautonomia specialist). I'm fairly certain a good many patients are in the same meds. Try talking to your doc or a pharmacist that is familiar with these medications!

What interaction are you referring to? I've been on Florinef and Claritin for years. I've never had a doctor or pharmacist warn of any interaction. I'm very curious who told you this? Thanks!

Thanks guys! I fortunately don't have any pain issues so I wouldn't need the SNRI for that. I'm just looking for something to give me an extra boost as far as energy and overall stability if heart rate. I've been reluctant to try SSRIs for years, but I've tried all of the other viable medication options. Just want to make sure I'm functioning at the best level my body is capable of.

Hi guys, I've decided to give SSRI's a try this summer. I spoke with my doctor and he said I may want to try a SNRI instead. Any experiences or insights on the differences? I don't have Hyper POTS so I think I'd be okay with the extra norepinepherine. Thanks for the input!

Hi Alicia, I have had multiple root canals done following my POTS diagnosis. I haven't had trouble at all. They do NOT use metal to fill the empty canals. The metal post you are concerned about is used to anchor crowns if the tooth is unstable. It is most definitely not done with every root canal. I have 5 root canals and NO metal posts. Hope this info helps!

I've never used Beta Blockers, but I do take Clonodine to relax my sympathetic nervous system. It has helped stop my surges. I only take a small dose @ night & haven't had bad effects. I've been taking it over 5 years now. It may be worth checking into. I would recommend starting low as it can also cause drowsiness. It's on DINET's main web page if you want more information. Good luck, and keep us posted!

That's awesome! I was able to go back to working part time @ home as well. You will do GREAT! Just remember to let yourself rest when needed, & try setting flexible deadlines for yourself so you won't feel to overwhelmed. Congrats & keep us posted!

I also live in the South & don't tolerate compression hose in the heat. In the summer time I switch to abdominal compression only. I wear high waisted girdles that are Firm or extra firm. I get mine from bare necessity.com.They're around $50. It's still hot, but not as bad as the hose. I can definitely tell a difference when I take them off so I know they help the pooling. Hope this helps. Try to stay cool!

Thanks for the update Nina! I love my Midodrine and it makes me furious to think someone could take it away!!

So what do we have to do now? It looks like they are wanting to hear from people that are conducting clinical trials? Are they taking feedback from patients? This whole thing is so frusterating...WHY doesn't one of the generic companies just step up and take care of this?!

It's definately worth a shot! Your doctors don't seem to be worried about the possible spikes and it's a short acting medicine so if you don't like it for any reason you can just stop taking it. I know it's helped me have more upright time with noticablly less pooling in my legs. You can also start at a lower does...I think they have it in 2.5mg or you can split a 5mg tab just to see what it does to your blood pressure. Good luck and let us know how it goes.

What kind of skills do you have? Any specific education? I spent a lot of time researching online work and was fortunate to find that I could still work in my profession from home. If you have a masters degree you can do online tutoring or even be an online professor. You can check out sites like tutor.com if that's something you'd be interested in. There's also medical transcription or billing/coding. That can be hard to break into as lots of folks are trying to do it and less companies are hiring but it's still an option. Editing and writing can earn some extra income. Of course if you're into graphic design or have any computer background you can design web pages ect. from home. Aslo, some people earn money by blogging. If you sew you could earn money by being a seamstress (hemming pants etc.). There are quite a few companies that hire customer service reps. that work from home. If you check with your local vocational rehab agency they may be able to help you find reputable companies. Those are some ideas off the top of my head. Hopefully others will be able to add to the list for you!

I was a smoker...I stopped smoking over 4 yrs ago and have stayed a non-smoker mainly b/c of POTS. It's a catch 22 with smoking & dysautonomia. Nicatine is a vasoconstrictor so for some there will be benefit...but it also increases heartrate and does a bunch of other nasty things to your system. For me, I was feeling so horrible all the time that when I smoked it just made everything worse...I would get dizzy etc. I also smoked only outside so I had to decreased the amount I smoked everyday b/c I couldn't get outside as much...then right before my 30th I had to have surgery. I decided that was the time to quit b/c I would be forced to stay in bed for several days and could get through that initiall withdrawl. Up until then I had smoked everyday since I was 18....I had NEVER tried to stop before. For me it was more of a mental thing vs. a physical craving. Everyday that passed that I didn't smoke was a victory and by time I had reached a week I was too stubborn to give in. Surprisingly, it hasn't been all that difficult for me. I really am shocked b/c I was a smoker through and through...my friends smoked...it's associated with so much of my life. I just remember how horrible I would physically feel and have absoulutly NO desire to try it again. I NEVER get cravings...and when I'm around smokers now it just reinforces my decision. It's honestly one of the ONLY good things that POTS has done for me!! LOL Maybe I'm one of the lucky ones...but that's how I did it.

I would definately try it at 5mg. When I trialed Ritalin I started at 2.5mg. Unfortunatley it gave me angina and bad muscle cramping in my back so I didn't continue. Going to try some Adderal and see if it effects me any differently. I didn't have the racing thoughts but I did notice I would speak faster even at that low of a dose. You may want to try adding Midodrine to your routine if you haven't already. I think there was a memeber that would take a stimulant like Ritalin to start the day and when that wore off would switch to the Midodrine. Maybe talk to your doctor and see if this would be a possibilty.

It's the histamine. Histamine is a vasodialator and it also stimulates the sympathetic nervous system...so you'll have more blood pooling and increased heart rates and antsy feelings. I've noticed in the past several years a definate pattern with my symptoms relating to allergies. I always have a horrible time in the spring...summer / fall is up and down and then in winter I tend to level out. Have you tried any antihistamine treatments?

I'm trying to paste the link to a discussion about this drug for you! If it doesn't work just do a search for "octrotide" and it will bring it up. Several of our members are on this medication and should have information for you. Keep us posted!

Great news!! I will feel much better about the whole thing when the FDA makes some sort of announcement. I've been searching their website but haven't seen anything about this. The article said that the FDA "announced" it would keep Midodrine on the market...I wonder where we can go to view this? All and all, I'm very proud of the effort everyone put in to right this wrong!! Let's hope this decision stands.

Just a quick update. I spoke with Leslie at the FDA this afternoon. She said that they are going to have a meeting regarding this issue at the end of the week. They are counting all calls, letters and e-mails. She indicated that the best way to contact them at this time would be to send an e-mail to: druginfo@fda.hhs.gov They are printing these e-mails for the meeting. Apparently there is a public docket available but it has been so over-run with people contacting them that it is not accessable right now. They are still awaiting an official response from Shire but believe, as I do, that the future of this Medication is now in the hands of the generic manufacturers and the FDA. Every little thing we can do at this point helps...so don't give up yet!

I contacted the generic company that supplies my Midodrine (Mylan) yesterday via e-mail. I have yet to recieve a response. At this point I guess that's the best thing to do....contact these companies that manufacture the generic and hope one of them will pick up the ball on this.

Oh my gosh Erika! I JUST watched an episode of "Mystery Diagnosis" that had a woman with Stiff Person Syndrome! She was treated with muscle relaxers. So glad that you are getting some answers and hopefully some much needed relief.

MamaMorgan! So good to "see" you again!

These sound interesting! Have you seen them in stores or just online? Thanks for the info Kit!!

I just started...taking 15mg 2x's a day right now. I have noticed an improvement on my ability to be upright. I don't get that winded out of breath feeling as much now. I'm trying to decided if I want to increase to 30mgs or stay at 15 for now. The good thing is I haven't had any of the GI issues or nausea...probably b/c of the low dose. Maybe go back to the beginning with it and start at 30mg once a day...then increase to twice a day etc. Again, I'm just starting out on it so not much insight to offer. I know there have been previous threads...have you tried a search on Mestinon? Keep us posted!

Thanks for the support guys! Tommy, I'm actually going through a disability reveiw and I have no idea how this is going to effect their decision. I don't know what the process is and just hope they don't require the doctor to fill out anything!