My CAPS experience

[Tidux]

Hi there my nickname is Tidux, I would like to begin with my introduction by first of all saying thanks to host and maintain such of helpful community. I have been reading for several days before I decided to join and I must say, this has help me a lot to clear up feelings and confusing thoughts I have been carrying since I started to have health issues to this day.

In the spring of 2007 I had a thrombosis in my left leg, I went to the hospital and after a few weeks I was sent home. 2 month after I got 3 new ones in both legs and right arm, this second time I stayed at the hospital for a long month where I got several tests, ended up being diagnosed with APS and started to use Marevan. This medicine was a nightmare for me, shortly after I swallowed the pill I was getting dizzy, weak and having a lot of problems concentrating which I commented to my doctor several times until he told me that it was all in my head.

I have to say that I have always been physically active, I went running to work and back, my work was very physical too and at that time I knew my body limits pretty well. After the answer from my doctor I simply couldn't accept that my head was playing me around and I decided while visiting family in Spain to get a second opinion in that country. In Spain they found out that I was having an allergic reaction to Marevan, what they couldn't told me due the short time of my visit, if it was the Marevan or the colourant/dye used on it (Sorry if my English is not the best to define it).

On my way back to Norway I got 4 new thrombosis, this time both kidneys, leaver and the left leg again. In the hospital I started to use Clexane and I also changed doctor after a short visit to just drop on his desk the report from the Spanish hospital. They recommend me to fix the Clexane on my legs but, due my work I couldn't so I was doing on my belly. After about 6 month my belly was a big blue mark and the new doctor changed the medication to Decumarol.

The headaches at this time were something that had me very much worried, on my spare time I was a voluntary music teacher for kids with social problems and I got to a point where my headaches were giving me a hard time to even deal with my own kids. The new doctor couldn't give me a straight answer and after several month having more episodes with new thrombosis I felt he was getting frustrated about my case. One day I went telling him that I had pretty nasty pain in my abdomen and he answer me, I quote: "When a person goes on a chronicle sickness the brain tends to magnify the effects". The second time a doctor tells me such of comment so, I waited to 3 o'clock and went to the hospital and after the tests the specialist came into my room to tell me that I had 8 thrombosis in my leaver, kidneys and spleen, I looked at my wife and smile but, it was the kind of smile a person has as a way to try to don't break down, the specialist turned around and left the room saying in a very unpolite way that I should take this more serious. At that point I lost my calm crying and went out to the hall and yelled at him what my doctor told me earlier. He look at me in shock, then look at the floor and left without apologize.

So, I was diagnosed with CAPS. After I left the hospital the first thing I did was to visit my doctor, I waited very calmly until he finished to read the hospital report and I asked him if he was up to the task, if he is not I can easily try to look for someone else but, I also let him know that I wouldn't tolerate any more assumptions on my symptoms without a proper test. It is hard not to get mad like with the specialist who did my CT scan 4 weeks ago. While looking at my leaver on his monitor during the test he said that I should stop drinking alcohol, I looked at him and told him that my last zip was 25 years ago and I bet I have past that hangover, my last drink was at the age of 15 and never again. Or the doctor who sow me before the test which asked me why I was there, I was checking if I had a new thrombosis due my antiphospholipid syndrome I told him, he said Anti what!!??.

After 37 thrombosis I am using now a medicine called Pradaxa together with Albyl E has got me very stable for the last past year, the headaches are the same and I have gain too much extra weight but, I am working on it, the doctor has been very helpful too and we have got to know each other.

The worse of my experience is not what I have tell you about the doctors, that is just life, there is people that love what they do for a living and there is who is not in love with his work. The worse has been feeling alone, not understood, the depression this experiences drag you into and mostly, the process to try to accept the huge change my life has take in a very and relative short time.

So, this is been my experience so far and the best I have learn is to try to live one day at the time. I am looking back and this is a huge text wall... I just needed to drop it somewhere and I hope it could be use for someone to don't feel alone as I did.

[MaryF Administrator]

Hi there and welcome, and also thank you for the good feedback you give our community many people contribute with good histories and similar symptoms and often ideas for better care, and also we try to administrate the forum to suit everybody in a light and supportive manner. It would help if you could tell me where you are located so i can perhaps find some more detail for you. Many members on here have had to try out different combinations of medication and also we do have some with CAPS. Thank you for writing out your history for us to read. I look forward to hearing back from you. MaryF

[Manofmendip]

Hi Tidux and welcome.

I second what my colleague Mary has said and asked you.

Dave

[Tidux]

Thanks MaryF and Manofmendip for your welcome, I'm sorry I had to take a break from the monitor, the text wall was getting huge as my headache so, I tried to wrap it a bit too fast in consequence leaving things out.

I live in Arendal the south of Norway and I will gladly be very thankful to whatever detail you can add or information you may find helpful. I have been reading for the last past days many histories, comments and questions other users has posted, I have to admit that just by reading it has already help me a lot and I really mean it but, it is also a lot of info at once so, what I'm doing is to collect and bookmark info to then read more calm in between headaches.

Again thanks for all.

[MaryF Administrator in reply to Tidux]

Hello, here are some medical papers, I suggest you look at the names and locations of the doctors who are the authors of the medical writing: 1. ncbi.nlm.nih.gov/pubmed/206... 2. ncbi.nlm.nih.gov/pubmed/182... 3. uptodate.com/contents/diagn... 4. ehjcimaging.oxfordjournals.... 5. web.b.ebscohost.com/abstrac...

I hope this helps. MaryF

[Tidux in reply to MaryF]

I will be giving a look later on... Thank you so much MaryF

[Tiggercat]

HI Tidux

My husband (the one with APS) also suffered a CAPS event in 2012. I dragged him around Dr's for 2 weeks (after surgery, which was one of the triggers) before they believed he was actually sick and not just slowly recovering from Surgery.

He also suffered multi organ failure, with microocclusions in most organs. He lost his Adrenal Glands at the time and now is on Hydrocortisone for life to keep him alive.

We have now spent the last year trying to find out why he gets really bad headaches when he tries to do things. It was confirmed yesterday that although they can't see any obvious signs of stroke or the such, he definately suffered a brain injury. Part of that brain injury is the headache. He is a Mathmatician and Computer Programer/Architect so he relies on his brain to work, and ends up with the headache most days because of it.

The hardest part for him has been trying to convince the Dr's that he wasn't just depressed or suffering from Post Traumatic Stress Disorder, but had a physical problem.

Thankfully there are lots of people here that understand where you are coming from.

Visit often, you will find great support here.

[Tidux in reply to Tiggercat]

I couldn't hold the tears to come out while reading this... It is so frustrating having to convince a doctor about something you are certain of. Of course this situation drag us into a depression but, at the same time we know ourself, we live within our own body and we have a natural will to go forward.

I love to look at people, it helps me to get inspired to compose music, the rituals of how do they scratch their heads or the way they look other people passing by, the interactions when they are immerse in their work and lost contact with the details happening around them. When I was in the middle of an argument with my doctor I did compare him with the cashier at the supermarket, after 6 hours shift when they are obviously tired, they just get an item after item passing them through the bar code scanner, not having eye contact with the client and treating people the same way they treat those items. I told him that he made me feel like meat. I'm glad, that we had that bad experience which opened his eyes but, yeah it is hard not to think that may be true and I'm just going nuts by the way some of them rapidly jump into assumption.

Thanks for understanding where I'm coming from Tiggercat, it really makes me lose weight form my back. I also wish you and your husband the best.

[Lure2]

Hallo Tidux,

Thank you for your story of your life with APS so far. What a journey.

There are lately many Scandinavian people at this site. I am from Sweden. I also find this site most helpful in many ways. We are not alone. Bless England and prof Graham Hughes.

Take care and Good night.

Kerstin in Stockholm

[Tidux in reply to Lure2]

Hi Lure2, thanks to you to spare the time to read it and answer.

[jp83]

I read that and felt so sad at how much you have been let down and the fact you have in some way come to expect this insufficient care from your health care providers....it is a sad sad situation when someone gets to this point...where the shock factor of being made to feel like a hypochondriac wears off, that you sort of got used to it. I am so sorry that you have been through this and I am very, very glad you are here to tell the tale, be it unwell, but here. Sending you a massive hug and a nod of respect that you have kept your dignity by not going to town on these people who have let you down....as you would be well within your rights to do so. I hope you now get looked after properly and get some support....I think this group is a great place to start xxxx Jodi

[Tidux in reply to jp83]

I really can't find words to explain the feeling crashing me right now, I have got more understanding in a few hours after writing my post than in the last past 7 years since I got my first episode.

jp83 thanks a lot!!