At our wits end. I just want my sister back...

Posted by Rene Dominguez @drummerene, Aug 22, 2017

Hello all, I was hoping maybe I could find someone to possibly provide me with a possible diagnosis on what condition my sister may have and offer advice, remedy or at least treatment to what’s she’s been suffering for so long everyday for roughly 10 months already. She’s been seen by countless doctors and specialists like neurologist for example and even hospitalized. She’s had all the standard tests done to her like blood work, MRI’s and basically anything else you can think of and we have no solutions to her ongoing problems.

From all the doctors she’s seen throughout this course of months, recently only one has said she spotted a rare symptom that not may people get. I don’t remember what my sister said it’s called and she is not here with me at the moment. But basically she told me it consists of mucous that becomes trapped inside this part of the sinus cavity near an area close to the brain and stays lodged inside without being able to escape. And this the area filled with the mucous can become subject to infection and I think she explained it may have gotten to that point. But they gave her antibiotics for it and from what I noticed she seemed more upbeat in the following days. She explained if left untreated the symptoms can progress and cause other problems like seizures and even death.

But even before this, she was diagnosed with having panic attacks, migraines and they even thought she was just losing her mind because it has gotten so bad and she had become so low that she has been wanting to commit suicide which breaks my heart because I’ve never seen her like this and even then I have always seen her as a strong person and could never even imagine her saying something like this. It’s like she’s become a different person from all the hell she’s suffered.

They also tried to put her on psychiatric medications like very small doses of clonazepam and other medications I don’t even know about (I think she mentioned at one point something like “amitriptolene”) but she couldn’t tolerate the clonazepam at all and had to experience withdrawals from it even after only the first few times she took it. My mom said even her speech became slurred. It’s been really all so horrible just to witness and can’t even begin to understand what she’s gone through. I only just pray for her because I do know God listens to us regardless of what we think.

And honestly we don’t know what to think anymore because of the multitude of healthcare professionals she’s seen, that say it could be migraines and/or stress & anxiety, hormonal imbalances caused by giving birth to her first son, to the sinus/mucous infection problem. And my sister also did mention that tests showed that she did not have vertigo.

Here is a list with some of the things she is currently describing feeling or what I see from her also. And from what I understand all these symptoms have been ongoing since starting with all this. Some days worse than others.

• Can’t do heavy movements like in running or lifting heavy weights etc. Says if she were to try she would feel worse.
• Has lost weight due to changing diet to promote not upsetting her stomach area since she reported having to deal with Interstitial Cystitis and bloating symptoms that she thinks could be triggered by the migraines and dizziness she has.
• Difficulty breathing and anxiety/trembling caused by overwhelmingness of her relentless migraines and dizziness
• Migraines that we think may be triggering her dizziness but aren’t sure at the the same time
• Facial numbness on her right side
• Devoid of any emotion as if drained/exhausted and lifeless & hopeless. Lays in bed for a large part of the day.
• Diffuculty speaking and only speaks in a quiet voice
• I see her somewhat discolored (maybe yellow to whitish tinge?) or pale when she is at her worst moments but can’t be sure for certain; only to think my eyes may be playing tricks on me.
• Muscle spasms in her legs and face that seem to be like a quick jolt that seem to be more prevalent than anything at night when she’s in bed trying to sleep. Happens when she’s asleep she reports too. Could be one or more than a few she says just different on random days.
• Pain and aches in neck and shoulders
• Can’t seem to tolerate loud noises or bright lights like on a tv or even reading.
• Dizziness like someone is slowly & continuously rocking her from side to side and up and down simultaneously.
• Balance problems when walking from the dizziness; has to move slowly

And some treatments she utilizes for her spymptoms:

• A wet cloth that was put in freezer that she sets on her forehead for the migraines and dizziness
• Today she tried Ginger root tea while I was here with her and cashews which I read in many books and articles today that you shouldn’t eat any type of nuts if you have migraines but one arcticle I found online reccomended it even, so I’m confused if it’s really only one or the other even? Regardless she didn’t report any adverse effects from them, so i couldn’t say if they did anything…
• Also I’ve advised her other meditative techniques to help cure migraine headaches and anxiety that were taught to me by a psychologist and had helped me, since I rarely get headaches if at all anymore when I began to practice these body/mind awareness techniques. I don’t know if she does practice them even though she says she does try all the things I suggest to her. But I get the feeling she may not be willing, interested or have faith in these things and just says she does to make me happy. Hard to say or control that.
• Today we tried applying a peppermint oil stick rub to her forehead. I saw it suggested online together with menthol which we didn’t use but still like it said would help with inflammation and it actually did!! She’s been using it all day thank God and it’s been helping alleviate her pain!! But she says the dizziness is still present and wishes out of everything she could take that away the most and then the migraines would come after.

The only thing she says she is on I believe is a probiotic and I forget if she said birth control or not. I will confirm this with her tommorrow when I see her as well as anything else she may be on.

My mom has been taking care of my sister and her roughly one year and few month old very loveable, yet still very hyper baby boy in her and her husbands household. My mom’s been staying with her to provide meals, cleaning and helps care for my sisters son since my sister stays in bed for the most part of the day. My sister is even starting to think she could have MS or even Parkinson’s.

I hope someone out there would be so kind enough to suggest something or anything at all really. It hurts so much to see her in all this pain. Thank you to all of you who took the time to read this and I wish all of you who know some one or is someone who is suffering, all the absolute best and nothing but the best treatment you could ever want! God Bless all of you! 😀

Your friend,

Rene Dominguez

Liked by EES1

Hi @drummerene,
I’m so sorry to hear about your sister. This must be so hard to watch and not have any answers. While I commend you for reaching out to a patient community, we can’t diagnose. However, I hope fellow Connect members will have thoughts to add.

Has your sister considered going for a second opinion at Mayo Clinic? Mayo’s neurology department is ranked number 1 in the US.


Have you thought about chronic fatigue syndrome, that could explain a lot of symptoms, and many variations of migraine are linked to cfs like hemipeligic migraine and migrainous vertigo.

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