Horton neuralgia – Cluster headache – Itsemurhapäänsärky

I start to be really tired at this time a year. I can’t train because my attack’s take the best bunch out of me! I still do try but it is not likeable at all and makes mine pain worse.

Neck surgery at november eased some pain or made it differend and I don’t need so much astmatic medicine anymore. And the clumb they took away from my neck allows now the food and protein and stuff infiltrade to my body and my weight has come up.

It was really welcome because I weighted 60-62 kg. But who told the weight to all go around my weist and chest? 😃 Got manboobs now 🤢

Hospital said that fysical treatments and rehabilitation starts imidiadly after neck surgery.

But I’ve heard nothing about them since fysitherapeutics meeting who absolutely recommended rehabilitation.

They also throw me out from the neurology unit because they don’t have time for my kind of pation’s and they think that all is done.

Try to manage your own they said. And they didn’t even write me all the documents they promised to KELA and now I suffer from that.

I don’t understand the western Finlands healt care at all.

You need to be allmost dead and then they try to help you.

Other wise your a junkie who just wants pills and it is mind crashing to hear that kind of stuff after been suffering this desease from 2006.

And I’ve helped many people in Hortontuki as volunteer working for years in Finnish Migraine Association. And I have been first to try many dangerous medicine as a volunteer that Aki Hietaharju ja his contacts founded and searhed from around the world.

I was Europe’s first one they installed the ONS stimulator in my neck at 2008. And now it’s become one of the most used treatment for chronic horton neuralgy and here in Turku they just started new program where they install the same equipment for depression.

I miss Tampere a lot because in TAYS they treated me like a human being and I was highly respected. Here in Turku I am just a junkie and they don’t even try to listen me.

Best thing was that they said that you should read this and that… I did not told them that these puplications are made by me and Aki Hietaharju with Finnish Migraine Doctors associations help…

Where is healtcare going in western Finland?

I know the answer!

Hope you have a beautiful painless day and remember to stay cool, it’s coming a warm day!

With best regards

Pessi

I was in neck injury surgery in november end. Hospital said that rehabilisation will start imidiably but nothing happened? No papers to Finnish healt association KELA as they promised. They did nothing they promised.

They trow me out from neurology’s policlinic because they can’t help me and I can survive better on my own. What the hell?

Neurosurgery’s clinic hasn’t contacted me even the control should be monthly….. No rehab for my neck even thoug they said it starts imidiadly.

So I was so angry that I started rehab my self. Dangerous as hell but what else can I do?

I trained four to six times a week. But last thursday in floorball training one guy got upset about my play and hit me with the stick to my upper stick hand and it broke.

Bab luck and an asshole guy. Wrist broken and in nerve there has allso some problem. That problem needs nerve electric test go see if its broken. But can’t do that yet because that fracture in my wrist.

Horton neuralgy pain reliefed a little bit from surgery. But still have 24/7 VAS 5-7 pain and some really bad nightly attacks but these gladly but me in sleep because of pain. K.O. is my only medicine to attack. Can’t use Imigran injection anymore.

Life is hard but who said it would be easy?

Still here, most of you daily in my mind. Hope you still stay there. Even I haven’t been writing anymore and stopped doing the Horton tuki in Finnish Migraine Association.

Love U all. Hope you manage to control your pain and life smiles back to you at time to time

Love, Pessi

Tervehdys!

Olen pitäytynyt blogin pidosta pitkään poissa koska kyllästyin maailman ja somen raadollisuuteen.

Tahtoisin jatkaa kirjoittamista mutta olisipa tietokone.  Sekun oli yhteys välineeni tänne ja blogin ylläpito ilman tietokonetta on aika vaikeaa.  Ja jonkin verran sain myös toimeksiantoja wp pohjalle tehdä sivuja mutta ilman tietokonettani,  joka on kuulemma jo rikki on mahdottomuus tehdä näitä asioita.

Haluaisin niin kovasti palata blogini ja wp suunnittelun pariin.  Se rauhoittaa minua mutta miten suutari tekee kengät ilman työkalujaan?  Taikomalla?

No toivotaan että jonain päivänä minulla on varaa ostaa sellainen kone kun minulla oli.  Itseänihän ja sinisilmäisyyttänihän toisaalta saan asiasta syyttää….

Haluaisin niin muuttaa blogini ulkonäön ajantasalle ja muita sairastajia palvelevaksi sivustoksi taas.

 

Mutta palataan nyt Hortoniin ja minuun.  Asun nykyään Nousiaisissa vaimoni ja kolmen lapsen kanssa ja rakas tyttäreni asuu Tampereella.  Meillä on myös minimäykky Pikku Putkilon Leevi,  joka on aika tapaus.

Sairaus on ollut muutaman vuoden hieman rauhallisempi ja yhdessä vaiheessa treenasin jo itseni todella kovaan kuntoon.  Kasasin jopa joukkueen mutta sitten hajosi tuo niska ja en päässyt edes peliä pelaamaan.

Sain myös pienimuotoista työtä mutta sekin katkesi nyt sitten isoon niskaleikkaukseen.  Välilevy implantteja ja luudutusta ym.  Nyt taistelen parantuakseni ja jaksaakseni olla tarpeeksi paikoillaan mikä on kova haaste minulle.

Leikkausalue tulehtui jo sisältäpäin mutta selvisin siitä ja nyt uskon että minun tosiaan on oltava aivan hissunkissun että selviän tästä voittajana.  Pahin viholliseni,  paikallaan olo ja mitään tekemättömyys.

Toisaalta palkinto voi olla niinkin suuri että Hortonin jatkuva taustakipu vähenee tai jopa poistuu.  Siitä on ollut merkkejä ilmassa.  Nyt täytyisi vain malttaa olla paikallaan ja potilaana,  eikä leikkiä urheaa soturia.

Toivotan hyvää joulun odotusta kaikille ja mahdollisimman kivuttomia päiviä.

 

Kunnioituksella

 

Pessi

 

 

 

 

Life starts to be so hard again because my health is ruining all the good that want`s to come in to my life. 

 

I don t have a way to put all these anger and words out of me. 

 

So maybe blog helps as it did many years and kept me sane and alive. 

 

It has been hard to notice that you have to go thru all the same things now that you went thru with people who was around me when this shit started.  Had to admit that it puts me to the edge.  I don t need pitty, just need help to ease my road when I really try to make things better.  And I know that people who hasn t seen this disease and what it does to the sufferer, it is hard to understand it and it is easier to stay quiet and just left sufferer on his own.  Like he doesnt even exist.  I know I m plessed with unique love, maybe I am too much like a warrior and try to stand on my own and do not let people to come near.  Or I try to be a hero, because I am affraid that if I give this shit a stroke out of me, people who loves me gives up on me. Many times I am so lonely and keep these huge pains inside me and denie it. … Sad. ….

Täällä ollaan edelleen ja kärsitään.  Mennään kuitenkin eteenpäin mutta välillä tekisi mieli antaa periksi.

 

Pessi