Green48

I need assistance and was hoping someone on this site may have some insight. This has not been a good year for me. I hurt my back and found out I have Leukemia (in addition to the POTS, migraines and vertigo. The doctor put me on a 5 day pack of steroids for my back and I was also put on an antibiotic. Since then I have be to urgent care, the ER and my cast of doctors. The final consensus was the steroids and antibiotic triggered the irregular heart rates and plunged me back into full blown POTS. I feel very defeated. Has this happened to anyone else while taking steroids and/or antibiotic? Also anyone else out there who had POTS prior to a DX of leukemia? If yes, how did you deal with the POTS while taking treatment for leukemia?

I had a nuclear stress test yesterday that ended with me in the hospital. The emergency room thought I had a nasty reaction to either the nuclear dye , the drug used to chemically stimulate my heart (instead of using tread mill), or the drug used to reverse the effects of the stimulating drug. I had a difficult time breathing, my heart rate was crazy, there was an elephant on my chest, very dizzy, nausea, ungodly tired, and weak. Today, I am still very weak, tired, tachy, and dizzy. I have had POTS for 13 years now, but never expected this extreme type of reaction to a stress test (I have had treadmill tests before, but due to my history of passing out, the doctor wanted me to have the chemical test instead). From past experience with my POTS I have a feeling I will be like this for a couple of weeks or more. Has this type of reaction happened to anyone else who has had the chemically induced stress test? I am just trying to sort out what happened, it has been surreal.

Aida, I am so sorry to read of your suffering. I would not wish vertigo on my worst enemy. I was diagnosed with POTS 13 years ago. Vertigo was and continues to be my most challenging symptom. Over 13 years, I have been treated by 4 different neurologists and tried what seems like hundreds of abortive and preventative migraine treatments. Nothing has taken the vertigo completely away. The doctor has stated he feels my condition is permanent. Thru therapy, I have re-focused my efforts on living the best life I can within the confines of my symptoms. I have not worked for several years now, nor have I driven. I continue to receive periodic physical therapy for balance issues. I pray that you continue to remain strong, and I pray for your recovery.

About 4 years ago we purchased a Glacier Tex (GT) concealed cooling vest. It changed my life in that I can go outside in the hot& humid Florida summers. The vest was expensive, but well worth the price. The packs stay pretty frozen about 4-5 hours, and so far they have not leaked. My one grip with the vest is that it is restrictive (hard to bend over, etc.), and it feels heavy on. I tried using it under my clothes, but I felt liked I was stuffed, so I just wear it over my shirt now. I noted GT has since changed their ice packs to now offer a flex line. If I were to reorder this is what I would purchase. Has anyone tried another brand?

I to have had POTS for 9.5 years. I to struggle with the losses, and there have been many. The doctor recently told me I was showing signs of depression and referred me to a therapist. Therapy has given me the tools to start lifting above this chronic illness. I have started to accept the fact, I will never get better. I never wanted to admit this to myself, even though I knew it deep down, and it hurt. After 9.5 years I am finally allowing myself to grieve. It is hard with family, and friends for they do not all understand this condition and its effect on me, but slowly I have now started to talk with them in a constructive way instead of hiding from my symptoms. I was holding in so much anger, guilt, frustration, and loss. I am not emotionally perfect, but talk therapy has helped to take the edge off. Hold strong

Interested to know if anyone else with POTS has been diagnosed with Central Sleep Apnea? Am currently on oxygen at night.

Thanks for your replies. I keep thinking if I can figure out what caused the POTS, I can some how wrap my brain around it better.

Julieph85, I seek the same answers as you.

I am in the process of applying for SSDI and a PhD in psychology is accepted as well. I have been seeing a family therapist (who is not qualified to complete the Mental Residual Functional Capacity Assessment - not an MD or PhD). The therapist is writing a support letter for disability to SSA on my behalf. My lawyer told me if SSA feels it is nessecary for an MRFCA to be completed, SSA will send me to see a PHD psychologist on the government's dime.

Hi, My neurologists and cardiologists think my vistibular symptoms (severe migraines-vertigo, dizziness, syncope, loss of vision and hearing, head pain) and POTS are being caused by hormonal flucuations. I can not take homone replacement (we have tried several brands) for it gives me terrible and presistent vertigo. Has anyone else been told their POTS may be caused by hormonal flucuations? Has anyone developed POTS after having a hysterectomy? My symptoms started one year post hysterectomy (we left the ovaries in).

The doctor just put me on extended sick leave from my part-time job (not able to work full-time due to condition). He has me off a minimun of 4 months. Being a part-time employee, I am not covered under the Family Medical Leave Act, and I will not have a job when my leave is over (will be terminated by the company I work for prior to my leave expiring). I'm curious, are other POTS patients working? Are there any POTS patients out there who have secured SSI (disability)?

Thank you all so much for all of your supportive comments. I printed them off and my husband also read thru them. He to has wrestled with his emotions as related to my illness. He received comfort in knowing he is not the only one who has had to drive some where to pick up his stranded/incapacitated wife. I continue to be conflicted on those days I feel stronger and more moblle. On these days, I tend to become very optimistic when it comes to what I think I am able to do as compared to what I can actually do. It has been very hard for me to ask for help from my husband, friends and family. I use to be so independent, but thru time, prayer, being referred to DINET and joining the forum, I am learning I am not alone. I am learning to ask for help and learning to let go of that person I was before, but it is hard....Thanks again to all of you!

Thank you for this forum… I am so angry about having P.O.T.S. I use to cycle 156 miles per week. I jogged, hiked, and worked in the yard and garden. I caught a virus 6 years ago and my life has never been the same. On a good day I am able to drive the car to the grocery store and do the shopping, but I am wiped out the rest of the day. On a bad day I’m not able to drive, much less get out of bed, or off the couch. The low blood pressure, dizziness, tachycardia, migraines, vertigo, and exhaustion are crippling. I never dreamed that in my 40’s I would be such a mess. My husband has been great and I thank God every day for his strength and support, but this condition is a challenge to say the least. The doctor’s (Family Physician, Cardiologist, Neurologist), Physical Therapist, and Therapist all tell me I should be grateful for what I can do, but it is tough, for I want my old life back. When I push my limited physical boundaries, I end up incapacitated for 4+ days. I drink the fluids, ingest the salt, take the meds, rest, do the physical therapy, etc. but I am having a very hard time accepting this chapter of my life. How do others come to terms with this condition?

It depends on the day. Some days I can drive and other days I can not. On days where I am really tired, heart rate is up and/or I am lightheaded I no longer attempt to drive. My thought had been I could gut it out and drive, but after several times of my husband having to come get me (for I was forced to pull over some where due to symptoms) I started to listen to my body. I have had POTS 6 years now and I have learned when to not push it. I really miss not being able to just jump in the car and go like I use to...