New And In Need Of Suggestions

[Selah]

My son suffered a severe brain injury two years ago. His recovery has been remarkable, however, we are experiencing some strange symptoms that the doctors either don't have answers for or say it is autonomic and there is nothing they can do. And lately the word we been hearing is depression. I don't know enough to know what questions I should be asking or what direction I should be pushing them in.

DS seems to be in a "cycle" right now. He has lost 7lbs this past month - lost his appetite about 6 weeks ago. Constant nausea and overall feeling of muscle weakness, especially in arms and legs. We have been to the ER two times in the past 6 days. They give him fluids and he seems to rebound. His blood pressures don't seem to fluctuate much, so making it more difficult to pinpoint what is going on. At his last visit to the ER they took them lying down (128/58) sitting (124/53) standing (132/58). So they said his pressures are fine - I have been questioning them about how wide his pulse pressures are and they said it doesn't mean anything. His heartrate always seems to run low - 62 to 52. His RR seems to also run low 7-15.

He had the ACTH stim test done to rule out Adrenal Insufficiency. According to them everything is fine. His baseline cortisol was 27 (he was having a "bad" morning which is why I think his cortisol was high). After the "stim" of ACTH it went to 28. I questioned that there should have been a bigger response to the stim. They said as long as his cortisol is in the 20's he is fine and it didn't matter if he didn't respond. He seems to be having many adrenaline surges, at the peak of the surge, he will start shaking and then feel completely drain. At times he looks like he is having a heart attack. He has tried multiple times to start exercising but he said that he can't handle the "surges" afterwards. He has had a nagging back pain above his kidneys that moved to his stomach (one reason we went to ER) all test came back fine. (again I disagree with their conclusion regarding the stim test - there should have been a bigger response from the adrenal glands from the stim of ACTH.)

He has multiple episodes of "not able to breath deep enough". We have had multiple pulmonary function tests done but he is unable to complete them, so doctor can't really get a good idea of what is going on there. They gave him an inhaler to try but he said it doesn't help that much.

They want place him on Celexa for two reasons - one they think his serotonin levels might be low and the other is frustration with what is going on. He is starting to get "angry" that they can't figure what is going on.

Because of his brain injury he has central hypothyroidism, pituitary slightly out of whack. He is on 175 mcg of levothyroixne. He is also on provigil to help with his fatigue. In the beginning the provigil seemed to help a lot, but lately he said it has no effect on his fatigue level. They just got his thyroid numbers in range,

Several of his doctors feel that it there is some autonomic issue going on, but then some think he is just depressed. His main doctor who has followed him since his accident said that there really isn't a "good" test for autonomic disorders and that trial and error is going to have to be the course of treatment He did have a holter monitor for 24 hours and not to much showed up there. There were some runs of SVT but they were isolated so they said it was good and no need to followup. They placed him on the holter monitor to see if they could figure out why he feels short of breath. When I questioned that the "isolated" runs of SVT's correlated with the times he said he felt short of breath and having an "episode", they said there was no connection. His HR only went up to 158 during these times and they said he would have to have more runs of SVT's to make him short of breath. We are also going to have a sleep study done as well.

He has been tested and tested again so we are not sure what to do to help him feel better - any suggestions would be appreciated. One of the doctors is considering doing a trial run of hydrocotisone. Since his blood work is normal we have to document symptoms for several weeks. She is hesitate to start him on this and I don't disagree with her, however, after reading this board for the past several days. there does seem to be some connection with autonomic issues and adrenal issues.

Here is a list of him symptoms - any suggestions (even if it is we are not crazy) would be appreciated.

dehydration and weight loss

somedays seems "out of it" - he calls it the "loopy" stage

muscle aches (arms and legs)

fatigue level that seems to be getting worst

nausea

shortness of breath

unable to excerise for long periods of time

adrenaline surges (these come on just out of the blue)

loss of appetite

mood swings

Thank you

[potsgirl]

Hi Selah,

Welcome to the Forum! You'll find a lot of information and support here.

I'm unfamiliar with a lot of the testing your son is going through, but others here will likely have more medical advice. I can suggest that your son have a Tilt Table Test performed, to see what happens - most autonomic specialists seem to think that this is one of the best tests to determine dysautonomia. Also, I have no idea where you're located and what the medical facilities are like around you, but if your son's case is pretty complicated, a lot of people end up going to a major clinic that specializes in autonomic nervous system disorders - Mayo Clinic in MN, Cleveland Clinic in Ohio, and others. Doctors are listed on the home page of this Forum to help you find someone reputable that understands this disease, if that is what your son is suffering from.

Again, welcome!

Cheers,

Jana

[Selah]

Thanks Jana,

That is our hope - get some more insight.

We are close to the Cleveland Clinic but none of the doctors have made a suggestion to go there.

Again thanks for the welcome

[poppetkazutaka]

I'm not a medical professional, so disclaimer! I'm just telling you what they did to me to rule out certain things and I feel a nudge to mention it.

Have you done a 24 hr urine catch screening? I didn't see it in there but I've had painkillers so I might be a little loopy and have missed it. Something tells me to mention it, and I usually like to go with my gut feeling.

Try to find a good neurologist or endocrinologist in your area. Your general doctor could give you a referral to one.

[blsvlo]

I agree with both the Tilt table test but whatever you do don't let them use the blood pressure to determine the dysautonomia..... I am dx. with POTS and several doctors said I didn't have pots because my blood pressure didn't drop enough. I would also suggest the 24 hour urine that will see his level of sodium and it checks for some other important things... Please whatever you do be proactive with his health........don't give up and remember the Doctors work for you!!!! If you go in there and expect them to help you because you are paying them to do that it seems a little easier to get things done!!! Hugs