Sorry guys, I'm new at posting and I just need to vent. I was diagnosed with these two newer diseases about 7 months ago. This is such a pain. I am not allowed to drive/work/basically do things I would normally do because of the Autonomic disease. With this disease, I pass out at least twice a day due to physical exertion. I'm just so frustrated anymore. I'm missing out on doing things with my children especially. I can not go for a walk without supervision either. I just hate having the diabetes. Leave it to me to get this rare disease because of having diabetes so long. No hospital is really doing any research on this or offering any clinical trials. I was going to go to school fore nursing, now I have to re-discover want I want to do with my life at 30 years old. i also have to look for a career where I can not injure myself if I pass out.
Hi, Meghan!
My heart is breaking for you when reading your post. My daughter was diagnosed with Autonomic Dysfunction: Orthostatic Hypotension when she was around 11 years old. She is now 14, and for the first year, she was passing out/near passing out daily. It was the most horrible time in our lives, surpassing even the diagnoses of Type 1 at 5 years old. I posted on Juvenation last year trying to find out if any others out there struggled with this, and got in touch with another mom who's son suffers from this, as well.
Wondered if you have yet seen a Cardiologist about the condition. My daughter's cardio put her on several herbal remidies that have helped, and advised if she started having daily occurances again, there were several parmeceutial choices we could explore. Of course, I don't want her on medications unless abosolutely necessary, but if I had known about that option when things were really bad, I would have jumped at the chance.
This condition caused my daughter to develop extreme anxiety and agoraphobia, she was so afraid to get out of bed, because moving her body would drop her blood pressure (required me to home school). Ultimately, she stopped taking the correct insulin boluses with her pump, she was afraid to have a low blood sugar because she was thought it would cause her to pass out, like the orthostatic hypotension. Her A1C went up to 11%, and we had to take her to DRI in Miami for crisis intervention.
My point in telling you all of this, is to assure you that there is hope that your condition will get better. What we went through stopped my daughters life, and robbed her of a portion of her childhood that we will never get back. This condition is not well known, but more research is going on, and more specialists are becoming abreast of the latest treatments. Mayo clinic did a study about 5-6 years ago, and now there are some great support groups online, with good resources (see links below).
http://www.dinet.org/index.htm
http://newsblog.mayoclinic.org/2009/02/27/mayo-clinic-study-identifies-pots-treatments/
This website has a list of physicians that specialize in this condition, check out your area and see if their is one close to you. We traveled 5 hours to see a cardiologist that specializes in this autonomic dysfunction (aka POTS: Postural Orthostatic Tachycardia Syndrome).
Increasing your fluid intake, drinking G2 (low carb gatorade to increase electrolytes, taking salt substitute, elevating feet whenever possible, and therapeutic massage to increase circulation are all things you could look into in the meantime. All that you have been through will make you an even better nurse, don't give up on that dream as of yet!
Please feel free to contact if you need to vent, anytime! caroline.n.cohen@gmail.com
Prayers your way,
Caroline (sugarrushmom)
Caroline,
Thankyou so much. I've benn on medication for the low blood pressure, but I still pass out. The cardiologist can not put me on more meds, because I'm on the highest doses allowedd by law. The summer was the worst. Now, I still pass out everyday, but it is not as bad. In the summer it was 15 times or more a day. I've been wearing the ortho stockings, but they don't work either. When I go out to stores, I have a helmet and a walker with a seat in case I pass out. The only hard part about the nursing which I can not do right now are the clinicals. I've taken all of the pre-req's. I guess, I just miss the stuff with my children(6 and 5). The nuerologist I see specializes in autonomic dysfunctions, but he said thee is nothing else, because of the meds. The docs can not figure out why I still pass out. I haven't given up that dream, but as long as I pass out, I can not become a nurse. My e-mail is ro2meghan@yahoo.com and I'm also on facebook as Meghn moore.
I wish they could figure out the WHY part of this condition! Can't imagine how hard this must be for you, especially with having such young boys to raise. There has to be some answers out there somewhere as to how to control this condition, outside of the regimen you are already on. What does your endocrinologist say about all of this? The herbal products that the cardiologist put my daughter on are Swansons Circulation Essentials and Licorice Root extract...not sure if either of these would make any difference, but maybe you could see what your physician thinks. Wonder what current studies are being done, if any regarding this dysfunction and Type 1.
The neuro wanted me to have a catheter put into my chest and twice a week my cells would be cleaned (almost l;ike dialysis, but for cells). Once the neuro spoke with the endo, this test was not an option. The chances of it working for me were less than 50/50 with the diabetes. All of my docs have told me that I got this from having diabetes for 24 years. The cardio said that people with long term diseases (like diabetes and parkinson's) can develop this more easily because we already have an immune system disease. Thank you for the herbal remedies. How is your daughter doing?
Caela is 14 now, and as I mentioned was also diagnosed at 5 years old. She is doing so much better in terms of the POTS. Her sugars are very inconsistent, but hoping to utilize the glucose sensor more often to better figure out her basal rates. Her feet and hands are most always "pooling blood" and feel hot to the touch. She elevates her legs frequently and attempts to take the supplements most days.
My husband was diagnosed w/ Type 1 at 13 years old, but he does not have POTS, however, as you mentioned having Diabetes for over 25 years has caused some borderline complications. He is using the CGM more regularly, which has helped bring down his A1C. I am glad we have been able to connect on this forum. Will continue to pray that more research is done in this area and better medical strategies become available.
I hope you and your family enjoyed the holidays. My cardio is looking into trial research in New York and the Mayo Clinic. hopefully, I'll hea something soon and I'll keep you posted.