Jump to content

Feeling horrible and more frustrated!!


Recommended Posts

I have been feeling worse than ever these past couple of days. Migraine headaches which are new for me, severe pain in my abdomen and arms, weakness, fatigue, dizziness, and palps.!!! Grr!!!

My cardiologist is at a point where he has basically given up. He doesn't know anything about pots and therefor told me to make an appt. with my pcp b/c it could be a gi infection. Told me he would see me if i wanted, but doesn't have much more to offer.

My appt. with Dr. Grubb isn't until Oct. and my financial situation is making it look worse and worse for me to be able to get there.

My mom and dad don't understand my illness and really have shown no interest in learning more about it. All they care about is that I fulfill my obligations to them no matter how bad i may be feeling.

Work looks hopeless for me.

It is affecting my relationships!!!

I am so angry right now.

Frances

Link to comment
Share on other sites

Frances,

We have all been where you are now. In fact, I visit there every once in a while. However you won't always be so low, so don't give up. You need help right now that you aren't getting. If you can at all get to see Dr. Grubb, do so. He understands POTS better than most local cardiologists. And he is up on the latest meds and knows what works best with which kinds of POTS.

There is help for you. Support here on the DINET forum and there are some doctors who do know something about it. I have had pots for 25 years. For many years that I had to live with it, there was no help. And it affected my relationships and I lost friends. At least my family was understanding. Find a doctor that knows more that the one you are curently seeing. I know this is a tall order, but just keep plugging away until you get one. As for your family, don't appologize for what you can't do. Just be matter of fact about it. As for your visit to Dr. Grubb, get your family on your team to helpyou get there.

Michigan Jan

Link to comment
Share on other sites

Frances - Sounds like you need an understanding friend. Maybe you could post your city and state searching for another POTS person in your area. Talk on the phone a bit and then maybe meet at a restaurant. There are many people in my life that are NOT very supportive of me or even believe that this is an actual disease. It has helped greatly though to have a few close family members and friends to confide in and just talk through POTSy situations.

You may be experiencing the wrath of POTS due to the migraine. I find that when I have a migraine it takes anywhere from 2 days to a week to fully recover. I become very week and achy, I can't think, and all my POTS symptoms seem to gang up on me at once. During this time I usually just sort of lay around and watch movies. I ask for lots of help, when possible, and I don't try to do any major projects or trips. Hang in there :rolleyes:

Link to comment
Share on other sites

When ever I'm sick, or getting sick, my POTS symptoms are aggravated. It usually takes a week or so for me AFTER I'm over the illness for everything to die down.

Hang in there. This disease is a series of ups and downs...you need to be able to ride out the downs to be able to get to the better times (not necessarily all better, but better than NOW).

Nina :rolleyes:

Link to comment
Share on other sites

Frances,

I am sooo sorry you feel so awful right now. Take it one day at a time, and try not to get discouraged. Sounds like your doctor isn't trying very hard- who are you seeing? Have you been to any of the other doctors in our area? I've been seeing Dr. Abdallah for almost 3 years now, he has offices in Falls Church, Sterling, Rockville, Manassas, and Fredericksburg- he's a pediatric cardiologist with specialization in adult autonomic disorders- not as much of an expert as Grubb but definitely on the rise. I worked for him for a few months last spring and was amazed at the amount of POTS patients that came through the office. The office is a pain to deal with but the physician care is good. You wouldn't wait more than a week or two for a new patient appointment. He is more than happy to work with you on payment as well- you can set up a plan that works for you, they are not greedy.

There is also Dr. Khurana in Baltimore and Dr. Pocinki in DC, but I've never seen either of them.

POTS does affect relationships, but education is your best defense. Definitely get your hands on as much literature a you can- the DINET and NDRF sites have a lot of great information that you can give your parents to read. I was lucky to have the support of my parents, who still try to understand, but have had problems with myboyfriend of 5 years, who knew me before and after POTS and still doesn't seem to get why I'm not back to normal. It is hard- but keep plugging along! You are going to have "down" times but they will be balanced with "up" times and it makes life worth living. Hang on for the ride and be glad that you've been blessed with the ability to enjoy the little things in life that others go a lifetime without thinking twice about.

Take care and keep those fluids up!

Jessica

Link to comment
Share on other sites

Jessica,

I see a dr. named Dr. Nayak. He has been my cardiologist for 3 yrs. I was just dx with pots in January. All I hear is to hang in there until October. That they've tried all the medications, and I just have an extreme intolerance to all of them. I have been told to go to the er every time I pass out, but judging by this forum, it seems like most people are encouraged not to.

At this point I feel like all this disease is doing to me is progressing. It's scary.

Thanks for all the responses.

Frances

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...