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I have mixed emotions about Dr. Suleman. While I believe he is a caring doctor and I especially liked his support staff, I must have seen him during the height of his expansion. I received a POTS/NCS diagnosis, but had difficulty with physical therapy when I kept having migraines. Although Dr. Suleman said he would contact my neurologist in Houston, he never called after repeated attempts by me and my neuro. So I was the one who figured out midodrine and florinef were the cause of two hospital visits.

Then I ended up diagnosing myself with EDS one year after I had made three 3 trips to Suleman's office for joint/arm/leg pain. I scored 9/9 on on Beighton's test when Dr. Dhar examined me.

However, I saw Dr. Suleman right after his new office was opening. Since then he has diagnosed numerous patients with EDS and many people have been pleased with him. So, I believed I caught him during a bad time. He does have an extensive testing facility and is very knowledgable about autonomic dysfunction. His physical therapist and other staff members were great. Dr. Suleman was just stretched too thin at the time.

Thank- you for your replies. The on call docs decided to defer the issue to infectious disease. The mom is using the ear thermometer that the hospital used to use until a few years ago and the same one her PCP still uses.

The docs did acknowledge her daughter was hot to the touch, had chills, and was flushing. Mom is not comfortable putting a central line back in until the fever is gone (looks like MRSA). The problem is there isn't a fever under the hospital method, but there clearly is a fever when taken by ear and by observation.

I cannot find any articles that support which method to use for dysautonomia patients. Hopefully infectious disease docs will clearly observe the patient and see she is in distress.

Thanks again for the advice!

Dear All,

One of our members has a daughter with dysautonomia and EDS. Her daughter is very ill and recently had a central line put in for TPN. The line got infected.

We need your help. The children's hospital has been very good at addressing the infection. Line is out. Except the mom has always had to take her daughter's temp with an ear thermometer. A mouth thermometer rarely shows a temp. Her daughter is now showing a large spike again by the ear thermometer but the hospital refuses to go by the ear thermometer. The hospital insists on using the oral thermometer. Oral is 97 ear is 103.

Can anyone help with articles supporting ear thermometer?

Thanks,

Trish

Although Midodrine was a miracle drug for me at first, the headaches became unbearable. I was eventually hospitalized to bust the migraine. I tried midodrine again two years later so that I could go shopping. I will never try that again!

I had the same problem with florinef. I do not have Mast Cell, but I seem to be sensitive to medicines that can cause headaches.

My vitamin D level was 10 so my doctor prescribed 50,000 units once a week for 8 weeks. I am now on my ninth week and will switch to 2,000 units daily this week. Honestly, the 2,000 daily vitamin makes me somewhat nauseas, whereas the 50,000 unit pill did not bother me. Go figure!

Although I still have NCS, my tachycardia is gone!

Hi Kayla,

I am so sorry you are in the hospital. It sounds miserable.

Someone needs to check me on this issue, but it was my understanding under the patient's bill of rights, your doctors are required to consult a doctor at your request. There is no reason why your doctors cannot speak to your specialist, even if she practices at another hospital. I have been in the same position several times when a specialist from another hospital was consulted. Ditto for other friends too in other states.

If you talk to your doctors again and they refuse, I would request to speak to a patient advocate. You have a gastro specialist who understands your condition. There is no reason for these doctors to "reinvent the wheel".

Feel better soon!

Trish

I know how frustrating it can be. My boss, the owner of our company, did not believe his employees should take sick days. So my became very difficult when either my daughter or I was sick. I was able to complete some of my work from home, but the owner of the company wanted me available at any time for his questions or impromptu meetings.

Just remember to keep all of your communication with your employer positive and professional. I know that is difficult given the circumstances, but you do not want to give them any reason to state why your arrangement from home isn't working.

I know it is a hassle, but the more organized you are for your lawyer, the more likely he/she will be able to determine if you have a case and if you have damages.

I hope everything will work out well for you. Stress is the last thing you need.

Trish

Anna, I definitely will. My doctor told me the stress echo will have the effect on my heart as if I were standing.

I recently had a cardiac evaluation for a potential new procedure for POTS (stellate ganglion nerve block)

Unfortunately, it looks like my plans for the nerve block have been put on hold, because my EKG was abnormal when I stood up during my stress test (the rest of the test was normal). My cardiologist said the abnormal part could either be something wrong with the electrodes when I stood up or that EDS Hypermobility has affected the blood vessels in my heart. I am scheduled to have a dobutamine stress test to evaluate the blood vessels in my heart.

Does anyone know about this problem? I have always felt something tight in my chest when I stood up, but I thought it was related to POTS.

Any advice would be greatly appreciated.

Thanks,

Trish

Anoj,

I am really sorry to hear what you are going through. In my pre POTS life , I worked in the business world. The one thing I learned is if there is any possibly of pending litigation, write everything down. If you haven't already done so, briefly summarize all the conversations you have had with employees and managers at your company that could be relevant to your employment, the date, and anyone else who participated in the discussion. Make sure you have all of your email correspondence for your lawyer along with a employment summary (Ie. Date hired, short term disability dates, etc). Also, any previous employment reviews would help.

As McBlond said, the laws vary significantly from state to state, so your lawyer will provide you with advice. It is up to you to provide the evidence. (that is unless you do sue and your company is required to provide documentation).

Good luck!

Trish

Hi Katie,

I have EDS and very fibrous breasts. My ob/gyn told me fibrous breast can be genetic (it does seem to run in my family). I was also told caffeine can make the condition worse. Since I love my morning coffee, I have chosen to have fibrous breasts! (I have gone off of caffeine previously to see if it would reduce any of my symptoms. There were no changes, so I happily resumed my morning coffee.)

I have also had cyst biopsy which was negative. I will always need an ultrasound.

Regarding stretchy skin, I totally agree with Nowwhat". If you want to see examples of "stretchy skin", you can google image ehlers danlos hypermobility. Please realize you will see extreme examples, but there are also pictures of the more moderate cases meeting the criteria. I thought I was "normal" until I used the images from an exam and compared myself to a friend who is not hyper mobile. However, like Nowwhat said, only a experienced doctor can truly evaluate you.

I hope you find answers soon!

Trish

Ken,

Maybe this article will help:

http://www.ncbi.nlm.nih.gov/books/NBK1279/

Trish

I have not been able to tolerate any type of hormone. I ended up in the hospital with vicious headaches when I first took the pill and years later when I was given Premarin. My headaches and POTS symptoms are significantly worse during my period. However, my daughters have been able to tolerate birth control to lessen the frequency of headache/POTS symptoms.

The first round lasted around three weeks. I am on my 5th week so far on the second round. Regarding the sub occipital that was ablated, I had that procedure over a year ago and it is still working. So once the second occipital block wears off I plan on having the nerve ablated too. (I cannot begin to explain the overwhelming relief to wake up and not feel the " ice pick in my eye" pain I used to feel on a daily basis).

Maiysa - As I understand, there are different drugs that some docs prefer to uses for the blocks. Your experience sounds awful. Do you think it was an allergic reaction? Please feel free to PM me anytime. Although I have had nerve blocks by both a board certified pain management doc/anesthesiologist and by a neurologist who specializes in pain management, my daughter's pediatric neurologist (who I admire greatly) recommends only using a neurologist (preferably a headache specialist) for headache nerve blocks.

Trish

Diamond,

I forgot to mention I opted for the nerve block instead of botox. My older daughter had tried botox a few years ago for her headaches and did not get any relief. I have discoved that most medicines and/or treatments work similarily on my two daughters and me. So I opted for the blocks instead of botox. The three of us had all had nerve blocks this year by different doctors. Other than being hospitalized for iv DHE with Toradol and iv nausea meds, the blocks are the only way for us to get rid of a headache.

Also, Migranol and Cambia help us sometimes. We also take Effexor for preventative.

Hi Diamond,

I am so sorry you are having so much pain plus diabetes on top of everything. I share your difficulty with migraines as I have had the same issues as you for most of my life. Like you, I tried every drug imaginable. Recently, I changed doctors and discovered I was not having migraines. Instead, I have occipital and trigeminal neuralgia. I never understood why migraines were described as lasting 3-4 days in literature when my headaches could last for days, weeks, or sometimes months. I have finally found relief with nerve blocks. I also had my sub occipital ablated. My next step is to have the occipital nerve ablated by radio frequency. I think many of us with EDS hypermobility have headaches that are caused by neck/spine issues, but unfortunately there is not an easy answer out there for any of us - we are all unique on our journey

This form of treatment has helped me begin to address my other health issues such as EDS and POTS, because before I got rid of the symptoms from my headache, I could not do anything.

Please PM me if I can help in any way.

Take care,

Trish

What are your symptoms? Did you see your POTS doctor or a regular doctor? Can you tie any trigger to your flare such as a sleep problem? (that is one of my big triggers)

I am not the right person to answer because my flare has never gone away. But I do know that some people flare for various reasons and others for unknown reasons. I understand that some people can have normal vitals like you, but still feel horrible. So I would go back to the basics that worked for you before.

You should not have to drop out of school. Talk to your professors and explain your situation. I thought i had seen a link for college medical disability information somewhere on this forum.

I hope you feel better soon,

Trish

I am so sorry puppy love. I am sending you all the love, hugs, and positive affirmations that you deserve.

I think the hardest part of this syndrome is not being understood by our families. I hope someday your parents will understand, but you always have your Dinet family.

Trish

Hi there,

If it were not for Dinet, I would not have considered that I had EDS Hypermobility. My husband was somewhat embarrassed during the numerous genetic questions of "what brought you to our clinic" until I scored a 9/9 on the Beighton scale (i could not bend myself like in the pictures) and was told I met every major criteria. I now know what is wrong with my daughter too. So follow your gut.

This is one of the best articles on EDS by Dr. Levy. The article focuses on EDS hyper mobility but also discusses the other types.

http://www.ncbi.nlm.nih.gov/books/NBK1279/

This is the website for the EDS Foundation where you can find information in addition to great info from Dinet.

http://www.inspire.com/groups/ehlers-danlos-national-foundation/

Feel free to PM me any time. I see Dr. Dhar in Houston. She has assembled a team of doctors who understand EDS. Because such a large percentage of EDS patients have POTS, her team understands POTS just as well! (so far so good )

What medicine are you taking now? I have taken benedryl to help me sleep, but it wires some people. Like Kim said, the adrenaline rush can keep you up for along time. You probably need to call your doctor if you are either still unable to sleep by Monday afternoon and /or still have a headache with tachycardia. I am so sorry you feel miserable.

Hi Lemons

I am so sorry your family does not support you, but this family will. We "get it". When those bad days/weeks/months happen, I have to break the days down into hours and say "I am going to get through this hour". Sometimes I have to even say the next thirty minutes on a bad day, etc. Sooner than later, I would get through the day. Eventually a positive experience would happen that made things better. I have repeated that cycle many times. But I know I have friends on this site and friends who have stood by me, just like we will stand by for you.

For most of us, our lives have become very small. I have chosen to keep in touch with the people who still "lift me up" or people I can help. For family who do not get it at all, yes I have to deal with them, but I try to minimize my contact.

I am also seeing a counselor who has helped me immensely. There are many Samaritan centers that offer their services free of charge. Do you have someone in your area you can talk to?

I also had the same problem with missed appointments. I now use my calendar on my iPad - or I would use my phone as an

alternative.

Please PM me and I will be happy to talk anytime. Hang in there.

Trish

It's really weird but the doctor said a tilt test was not needed. My daughter's doctor is in the same office, but she is on vacation for two weeks. I trust my daughter's doctor with my life. So I am going to have them see her.

My daughter was diagnosed with vaso vagal when she started passing out and the cardiologist said she did not want to put my daughter through the misery of a tilt table. Looking back, if only the doctor would have pursed the TTT we would have not have had so many problems a few months later. I should have spoken up and asked if fainting while sitting made a difference.

Forever tired, I have have a call into my sister to find out how the docs induced a seizure and will let you know.

Thanks for all the advice everyone!

That is what I thought too. Have any of you seen this with POTS? The episodes are only happening every few months, so I don't know if he needs to be induced to have an "episode" in a 24 hour monitoring unit. (my sister has epilepsy and that is what the docs used to do to her).

I know we are just "talking" and not recommending medical treatment at all. But POTS doesn't seem to fit this diagnosis. The doctor who diagnosed the child is very young, but has a reputation for being smart and open minded. The doctor also works in the same office with a great doctor who has knowledge of POTS.

One of my best friends has a son who will be 16 in May. Several months ago he told his mom that he was "losing time in class". She really did not know what he meant until he was driving with his dad last month, lost control of the car and went up on the curb. He later told his mom he did not remember what happened when he was driving the car, and it was the exact feeling he has when he " loses time" in class.

Other than febrile seizures and allergies, my friend's son has been healthy. He plays on the high school baseball team and is a bright student.

My friend took her son to a new pediatric neurologist. The doctor diagnosed him with POTS based on the poor mans tilt. My friend did not think her son's pulse went up more than 30 beats, but he is starting to have fatigue, mild headaches, and mild digestive issues. His EEG was clear. The doctor just wants to add fluids and salt. His mom is concerned about finding a cause of the " lost time", because he will be driving in May.

I have a few questions:

1). Have any of you had this symptom of " lost time"? Is this a pre syncope condition? I had a friend who did the same thing years ago but she had epilepsy.

2). The "POTS like symptoms" started after his first round of allergy shots. Could the shots have triggered anything? The doctor says no.

Any input would be greatly appreciated!

Thanks,

Trish

Your input would be greatly appreciated. Something just

2)

Hi KJMom,

Welcome to Dinet. I am so sorry to hear what your daughter and your family are going through. My daughter was also diagnosed with POTS when she was 10 years old so I can definitely relate. My daughter was not affected at first with stomach issues until later, but I would recommend that you find a POTS specialist who specializes in gastro cases if your daughter continues to have problems.

Also, I found extensive help with school issues from DYNAkids.org.

There are many different theories and causes for the stomach pain/nausea/weight loss. The hardest part about dysautonomia/POTS is that it is a syndrome with many possible underlying causes. So, each person's case is unique.

There are some great articles listed on the home page of Dinet. There is also a an extensive handout on the NDRF.org website.

My daughter was homebound for 2 1/2 years, but she went to school on days she felt good enough to go if only for an hour. She started to get better after a major growth spurt when she was 12 1/2. She is now a freshman in high school - on the swim team and back in GT classes. I never would have believed it was possible.