No idea what’s wrong with me


#1

I’m Amy and I have a twin sister Ann. We just turned 50 last week. For several years my twin was married to a very narcissistic man who mentally beat her down. I’ve always lived in another state and wasn’t there to help with her kids or her in general. This guy was a peach - after they divorced he literally threatened to go to their son’s school and take him. He’s a pilot with a small plane. School was locked down. My other sister happens to be a secretary at the school. Once he gets there, he says, “I was just bringing him lunch from McDonald’s.” Total jerk. So I get why she has so many mental issues. First husband told her he wanted a divorce when he was deployed to the Philippines after running up credit cards like you wouldn’t believe. The kids were 3 and 8. Great dad until he did that. She’s now married to a man who treats her like a queen that we graduated HS with and although she still has issues, he is patient, caring, understanding, hardworking - my whole family adores him. Now about me. I’ve got nothing to “complain” about. Absolutely wonderful husband- just celebrated 22 years of marriage, have 2 independent and kind lovely daughters 17 & 20, I don’t have to work & have been a stay at home mom since my first was born. In 2003, my husband was deployed to Iraq. My doctor, I’m sure with good intentions, put me on Zoloft even though I had no signs of depression or anything else but he said I would need them. Dosage got up to 300mg over the years. About 10 years ago, I got chicken Pox and then a few months later I got a migraine that lasted for 2 months. I was topamaxed to the hilt! My brain has never been the same. I couldn’t even spell my name. A neuro finally put me in the hospital to detox me from that plus did a week long DHE treatment to break the migraine. Which it did for a total of 2 days. Had a migraine at various degrees since 2007. Been on every preventative known to man. At one point I was on 4 at the same time. Even tried Botox but it didn’t work and I HATED the numb feeling. I finally said enough is enough and my regular dr and I slowly tapered me off all of them. Still have head pain but it’s no worse then when I was taking a handful of drugs. A couple of years later I had 2 seizures while at the dentist office. EMTs just happened to be working out next door so everyone got to see the 2nd one. Lovely. Having a cap put on a tooth and the dentist had to get me to a certain point in the procedure before they could take me to the ER. Didn’t drive for a year. No more seizures. Agoraphobia set in slowly. Husband travels a lot for his job. Over the years I have been diagnosed with REM sleep disorder. Basically I didn’t know that kicking the crap out of your husband, screaming, falling out of bed and busting your lip or giving yourself a black eye was abnormal until my new neurologist happened to also specialize in sleep disorders. Things have gone downhill fast. A few months ago I started having these rage episodes. I have never, ever acted like I do when I’m in the midst of one. It’s almost like an out of body experience. But I can’t stop myself from saying horrible things, breaking things, just being downright mean to my oh so patient husband. This last episode lasted 4 days. Xanax does nothing to calm it down. Our youngest daughter - senior in HS - is a dancer & had ACL surgery in July. Officer on high school drill team plus a competitive dancer. Yesterday was the first time she got to dance at a drill team competition and in only one dance where her parts were modified so she could be in it. I couldn’t bring myself to leave my house and be In the loud, unknown to watch my baby girl do the thing she loves the most. The guilt - overwhelming. And it has been the hardest thing ever to find a psychiatrist!! Why is it so hard? 2-3 month wait! I’m at the point I’m willing to do anything to be me again. I’m tired of crying and all the stupid anger. Yesterday was the first time I had ever told my husband they would be better off without me. I was finally accepted to Mayo Clinic in Rochester in the psychiatric dept and have an appt March 5-7. Yay!! Then we just found out that the Neuro dept also accepted me. Calling tomorrow to make that appt. Well my husband is because j don’t talk on the phone anymore. Has anyone ever been treated there and were you happy with the outcome?

Thanks for reading my book lol. Did not intend to babble on quite that much!


#2

It sounds like you you’ve had a hell of a time. The only thing I can suggest is that you push your neurologist into ordering an MRI of your brain. I was having rages that were out of character for me along with unexplained pain and finally sleeping for 4 to 5 days at a time. Turned out I have Multiple Sclerosis. I’m not saying that’s what you have, but you need to get any physical issues (not the right word, but my aphasia is keeping me from getting the right ones) squared away before you assume it’s just psychiatric. Good luck! Hugs if you want them!


#3

Thank you so much for replying! See that’s why I’m glad I finally “spoke” out. I feel like since I had chicken pox in 2008 at 39 years old, I haven’t been the same since. Or maybe it was topamax that changed my brain or the 17 years on Zoloft that I didn’t need in the first place (husband deployed to Iraq in ‘03 & my dr started me on it with good intentions I’m sure) but I had zero signs of depression or any other mental health issues. Just the normal worry about your husband being gone for a year to a war zone but I wish I had never started it.
There is good news though! I have a neuro & psych appts at Mayo Clinic in Rochester in March. Having all records sent there now and trying to get the timeline of “events” straightened out so maybe we can get an answer and see some light at the end of this tunnel. And yes hugs!! I don’t feel quite as alone now.


#4

That’s good! I’m glad I helped a little. If anybody can figure it out it’s Mayo.
If you’re on Twitter, you might want to check into #TheBloggessTribe. It’s centered around Jenny Lawson (The Bloggess) and her book “Furiously Happy” which I highly recommend. There are a lot of wonderful, broken people who will listen to you, cry with you, and send you cat or dog pictures if you need them. I’m @Pathseekerken over there, so feel free to drop in if you want want.


#5

Thanks for the book recommendation! I do have a twitter account but really just use it to see what my 17 year old and 20 year old daughters are up to lol!! Still haven’t learned to check their Snapchat 😂! Although my youngest likes to video me when I don’t know and will send it in her streaks or private story or whatever that is. I told her if she did it again I was going to do the same to her and put it on my FB. And I have over 1000 friends! 😜 That made her quit!
I had an appt with a psychologist this morning (1st ever with a mental health professional) and the word bipolar came up again as a possibility. But I just turned 50 and never had any mental issues until like 2013 or so. I asked her isn’t that awfully late in life to develop that and she said it was rare. I liked her but am ready to go to a mayo and hopefully get some real answers. Personally I think it has to do with being on Zoloft for SO long when I wasn’t depressed in the first place, 10 years of constant migraines non-stop and taking Topamax to the point I couldn’t spell my husband’s name or walk down our hallway without bumping a wall… I think my brain has changed. Developed agoraphobia after the 2 seizures and couldn’t drive for a year. Throw in a tornado that completely destroyed our home Dec 26, 2015 (although very blessed we had terrific insurance that took care of us from day one & the fact we weren’t home and didn’t experience the trauma so many of our neighbors did.) Until you’ve gone through that or something similar, no one else can relate. But God was so good to us. I’ll see if I can find guy on Twitter! And thank you again for your insight!!


#6

And FYI I’m very partial to boxers! Here’s our rescue Skeet. By my side almost every waking minute!


#7

LOVE your Skeet. He is ADORABLE!!!

Mayo will, for sure, be able to help figure this out with you. Im pretty confident in that. Sending you hugs (if that’s ok or wanted). when I am at having a difficult time, I try to get through it with taking deep breaths (not sure for how long or how many) and envision something positive that happened before that difficult moment, or try to remember my reflection/motivation card of the day and focus on that for a few minutes. Be sure to utilize your support system, which it sounds like you do. Sometimes, I do “fake it until you make it”. so I will act/pretend to be ok and pretty soon, my brain will believe it. not that this is a good thing, but it works for me at times. Good luck at Mayo. I wish you well. Continue reaching out. DML


#8

Of course hugs! Thank you! Hard to believe our Skeet was dumped on the street and was luckily rescued by a terrific group. Not sure how old he is but somewhere between 7-9. Best dog ever!!
Thank you for the advice also. I am grateful to be able to text my twin sister anytime because she seems to be on the other side of whatever is going on with us - except for the agoraphobia. When I couldn’t bring myself to go to our family Christmas get-to-gather (big family - lots of grandkids - loud - 4 hours away) she was the one to “break the news” to my parents who understood. Last year I sobbed through the whole event. My awesome husband took one of our daughters to it (other daughter is in college in Savannah & Lee family Christmas was in January!) because it is so important to me that my girls remember our traditions. My normally black & white cut and dried military man has become this hugely compassionate and patient man who doesn’t really understand but reminds me constantly he’s not going anywhere. I’m constantly asking if I’ve always been like this and he assures me I haven’t. I couldn’t be more blessed! I know I feel like there are others who get it! Thank you so much!


#9

I too have a husband who is understanding and helpful. I have/similar issues to yours and am about your age. Zoloft and Topomax are nightmare drugs to me! Oh, and there’s some correlation between migraines and epilepsy.

I have a great counselor at my psychiatrist office and she’s helping me deal with this. My issue turned out to be seizures/epilepsy. Complex partial seizures can be very scary because you’re not unconscious but you also are unaware . Kind of like the lights are on but nobody’s home. One church woman stood in the middle of the street and started taking off all her clothes!! So I understand what you’re going through. Your neurologist and psychiatrist. can help you with some tests which look at your brain and diagnose. At least your doc isn’t blowing you off like my former gp did for years. Email me privately please if I can help more.


#10

Wow! Someone else that has issues with topamax & Zoloft! I have never met anyone else! I don’t know if I’m relieved or sad! It’s been horrible but my neuro, gp and pill pusher at the psychiatrist office all say to stay at 50 in the Zoloft (down from 3 freaking hundred). Part of me thinks my anger/rage issues are from tapering off the Zoloft and I just want to get it over with!! I knew it would be hard after 17 years. My neuro actually said “your brain will never be the same again” and that was devastating honestly.
I went to a psychologist for the 2nd time yesterday. They must have given me the most inexperienced one in this huge practice. She looks 12 and is awkward as anyone I’ve ever met. Yesterday we were supposed to learn “coping skills” but apparently we ran out of time before we could do that.” She had asked me what angers me and so I was telling her. I was actually speaking it to a professional. Outloud. When the tornado destroyed our hone we literally had boxes from floor to ceiling in a huge dining room and upstairs in a guest bathroom. The company that our insurance recommended to clean it was too freaking expensive and it came out of what we would get to re-build. Our elderly neighbors across the street ended up using a service. (my husband highly encouraged them not to - they charged us $75 bucks to clean a jcpenney jacket that wasn’t even mine! It had blown in from someone else’s house! No thanks!!) This couple had to bulldoze to the dirt like we did. They ended up with like $12k with what they were given to rebuild. Different insurance company but dang I wish they had listened to us. All of her Elvis memorabilia ended up in our backyard destroyed plus things we have yet to find out who they belong to. My daughters ID card from school was found in a field an hour north in Oklahoma as the crow flies.
Boy did I get off subject. 😖
Anyway - I was the one that went through hundreds of boxes at our rental house, day in and day out for months and months cleaning everything, deciding what to donate, etc. My husband was so busy trying to get a new house built plus he travels ALOT. And my two teens honestly I think were wanting to put it all out of their minds as their way of coping. They didn’t want to go talk to a therapist. We offered that to them many times. So anyway it all came out yesterday in a flood that I am still looking at all of my husband’s stuff (tons of tools, yard stuff, router table, just a massive amount of stuff that was in his former shop that hasn’t been touched. Our backyard still has debris although it is pushed up against the back fence. This is 2 years since we moved into our rebuilt home. And we had this massive 3rd garage bay built just for his big Texas truck that he’s never parked in because it’s full of stuff he needs to go through and clean or toss. Yet we also built this new shop that’s bigger then our first home. Practically empty. 2 years. Except a 1969 Chevy truck he bought when he was probably 18 to restore and in April he turns 50. Hasn’t touched it to do anything since we got married 22 years ago. But he doesn’t want to move anything into the shop until we get it paneled. 2 years. I want this tornado to be OVER. I want to move on. Enjoy our new home that we have been so blessed with. But when I walk into the garage or backyard there it is again just staring me in the face. But I have not complained at all to him about it because he works so hard, travels so much, has taken over practically everything down to sometimes even cooking meals before he leaves to go out of town so I’ll eat. Seriously. Couldn’t ask for a better husband. Except for his procrastination trait. Army and work…on it. Nothing slips by. But all of that came out yesterday and she’s just looking at me saying “I hear you” and I’ve never done this before! I don’t know what I’m supposed to do! There were plenty of times when I shut up she could have jumped in and said something! Instead I hear, “ok our time is up for this week and walks me out to the waiting room with tears rolling down my face where my husband and 100 other people are are sitting and I’m mortified. My husband checks us out and makes the next appt. I told him I did not want to talk about anything because I felt like I had betrayed him after all of the things he does to take up the slack. I also told him to cancel that appt cause it was a waste of money and I’m never going to go see her again. He asked if I was able to learn any coping skills (from what she had told us in our first meeting) and I said nope. Then he told me he wanted to help me in anyway he could so since I’ve never once told him how I wanted the garage and backyard to look like a tornado hadn’t hit & how alone I felt cleaning every tiny thing., I let it out on the 45 minute drive home. Half of me glad to get it out, the other half filled with guilt for talking badly about him when he does so much. We had such a blow up last night. Never in 22 years have I ever talked to him or him to me like we did. Finally he came over and said he loved me and was not going anywhere and he was glad he knew how I felt and to top it off he just brought me my favorite drink - an icee - I’m not hard to please lol.
I typed way more then I ever intended to. I guess because I’ve never told anyone (except the 12 year old looking psychologist yesterday) and it’s somewhat anonymous here. It helps.


#11

Exactly what tests did they do for your brain? My good friend who is in the medical field says I should have my brain mapped to see how 17 years of Zoloft has changed it. I brought it up to my neuro and he did blow it off saying that was like future science or something. He referred me to a neuropsychologist but I ended up with the 12 year old psychologist. 🙄 I am completely dreading going to Mayo because I have to fly ugh, I hate being around people, I don’t know what to expect and my biggest fear - they say nothing is wrong. However I don’t think hubs is going to let me back out lol.


#12

Amylee, you need to find a counselor/therapist who will listen so you can get it all out. My first one was in a huge office like that. I left feeling crummy every time. I felt sick and had to cancel a couple of sessions before I realized the issue was HER being disrespectful to me. I quit that nerve-wracking office, too. I learned later that the entire office made a lot of patients and employees miserable, even some of the therapists and doctors. I found one who had left there to go out on his own. :). He was the psychiatrist I had originally been referred to who was to busy to take more patients. I really liked the psychiatrist at the old office but he didn’t make up for the counselor and office problems.

The office I go to now has a wonderful doc, two PAs, and three counselors. The therapists and their waiting room is upstairs. The doc and PAs have two comfy, cozy waiting areas. No issues with lots of people crowding you if someone is upset.

My therapist told me you got to get it all out. No coping strategies will really help until she knows you and your issues and trust is there. It can take many visits and you’ll be venting about things as they come.

Can you find out from your insurance company and docs if there’s a similar office in-network? Then say what you need in a counselor. Someone experienced who will listen.

I didn’t know what to expect when I started this and didn’t know how to handle that first office. I hope this helps you.


#13

Mayo is great. Minnesota, right? I ask because we have one nearby, in Jacksonville, FL.


#14

Try squeezing or clinching your toes when you get nervous about the flight. And definitely on the flight. My counselor told me that she uses that technique. It works!


#15

Not sure if anyone even checks my post lol but thought I’d give an update. Mayo is THE BOMB! Within a few minutes of my very first appt (psychiatrist) after telling her some of my history (actually had it written down because I can’t remember a lot) she said, “We need to do bloodwork.” Ok. Interesting coming from a psychiatrist but she was spot on. The appt with her actually lasted 2 hours and her assistant was in there as well as my husband who filled in a lot of the blanks. ❤️ Long story short - I’ve been telling my GP for probably 10 years that I always feel like I have mono. Had it in high school. She checks the regular CBC panel occasionally and hemoglobin has always been normal. The doctor at Mayo went further and checked ferritin (iron storage), folate, actual iron level, saturation, etc. Normal ferritin level is 20-200. Mine was a 6. Folate was 5.7 - should be above 6 I think. Iron was a whopping 10. Saturation was I think 2 percent? She said skip the iron pills and go straight for an infusion. Plus she also diagnosed me with PTSD from the after effects of the tornado. Didn’t see that one coming. BUT the question is why is my hemoglobin always normal range (low end) but storage and iron levels are so low? Those are “extra” tests and I asked my GP if she had ever over 10 years checked that and she answered no but we can’t change the past. I was showing CLASSIC symptoms - it’s not anemia but low storage & iron - which all basically have the same symptoms. 10 years!! So GP rechecked a few things and this time ferritin was 5.7. 🙄 Referred me to a hemotologist. That was a month off but my husband said to the coordinator forget him - who’s the first one that can see her. Finally had an appt on Friday. Before she does an infusion, she’s checking for a few other things (Jak 2 mutation ? and Erythropoietin
https://www.medicinenet.com/erythropoietin/article.htm#erythropoietin_epo_definition_and_facts ) to actually determine a cause before she treats. Finally!! Someone wants to do that instead of throwing drugs at symptoms. She’s not doing an infusion ASAP because there is a possibility I’m making too much blood (not iron) and if I was then she’d have to take it back out. I think maybe she said the iron might not be absorbing from the blood. Wanted me to have a colonoscopy but I just did the easier quicker way (Google it if you don’t know 😉) a few weeks ago because I just turned 50 and it came back normal so we are going to wait for tests results before we do that. 👍🏻
Neurologist at Mayo was also awesome. He had me try Emgality. Ummm. Not working out. I already have tinnitus and within a day it got HORRIBLE. Like worse then any migraine. I guess I just thought I had it bad. It’s normally just the left ear but both ears had/have the super high pitched “squeal” that is driving me insane. As the first dose of Emgality is wearing off, it’s getting a little better. I am never doing that again. Plus those shots are PAINFUL. Double does for the first round so I had my husband just do both auto injectors in my upper legs at the same time. Supposed to leave them in until they click. I screamed from somewhere deep inside me and scared the crap out of both of us. And I’ve had my share of shots. This was painful!! Luckily he also gave me a script to try that device for your forehead. https://www.cefaly.us/en/migraine-treatment-cefaly
So that’s the update. The neuro also scheduled me an appt in May for the sleep dept and I also go back for follow up visits with him and the psych dept.


#16

Interesting!! I’ll definitely try that!


#17

Amylee, I want to follow your progress. My daughter and I have some things In common with you: migraines, tinnitus (that left ear just screams sometimes) and others. I’m always here to listen if you need me. We live in hurricane country and I understand ptsd from a different experience. I really can empathize with the doc situation. So glad Mayo is a help to you! Do you feel some relief and maybe vindication now that you’re being understood as having real medical issues?


#18

Hugs anytime.


#19

So cute


#20

Absolutely I felt vindicated! It’s been 10 years of mostly “hidden” issues. No one can see a migraine - well my husband totally sees it in my eyes when they ramp up! ❤️ No one can hear tinnitus or feel anxiety or agoraphobia. Some think you are just lazy when you sleep and sleep and sleep. I have fallen asleep at a huge and loud Dave Ramsey conference, family gatherings, heck even a basketball game. And church. 😖 That’s the worst. 4 broken molars over the past 8 years have been attributed to old fillings used in cavities, not my constant ice craving. My husband even bought me an Opal ice machine that makes ice like Sonic so it would be softer. FYI - you can also freeze carbonated water and air bubbles form so it’s soft to chew. 😜
I would definitely say if you haven’t had ferritin level checked - make your doctor do it! Had I known that you could still have iron issues even if your hemoglobin is fine - I would have pushed harder years ago. But when doc says all looks normal after a simple CBC then you just mark that off your list. I’ve asked my husband of 22 years if I’ve always been like this and he reassures me I have not.
It’s been a journey. I just hope I’m coming to the end of it. I hope y’all find out answers too! And FYI - our insurance is Tri-Care Reserve Select. Husband has been in the Army Reserves over 30 years, now a Sgt Major. Not a lot of places take that insurance. We figured we’d be out thousands for the Mayo trip. So far we’ve paid $75 for 3 full days of appts and testing. They take our insurance!!